People usually go through phases where all their friends are getting married, and then all their friends are having kids/trying to become pregnant. I realize I'm going through something like that but with the people I watch on UA-cam. lol.
@@hannahwitton Just so you know PCO is a symptom and PCOS is the condition. Almost none of the cysts are going to be multiple and bilateral, except the follicular cysts that appear with PCOS. Or at least that is what I have been told in my 20+ years of dealing with PCOS.
In light of today's announcement, its kinda fun watching this knowing you are pregnant in most of it and just didn't know! (or didn't tell us anyway) Congratulations!
You keep saying "it's fine" throughout the video in reference to NHS buerocracy and doctors delaying your access to healthcare through mistakes, but honestly? It's really not fine. Going around in referral circles and long waitlists and useless appointments that only tell you that you're in the wrong place are serious issues and I hope that you have far better luck at the fertility clinic.
You can see after the gynae appt 13:00 ish, the sadness and frustration, and my heart goes out to her. Also on a fertility journey and had many issues with clinics and gyn.
As a medical professional: Suffering from xyz is just standard wording used for any condition patient may have. And yes. We do use silly phrases often. :D Lots of love.
This is interesting insight but I think there is room here to consider how ablest language is embedded into standard practise. Some people may be suffering, some may not. The condition itself doesn't decide, the patient does , and the idea that anything outside of being completely able-bodied is "to suffer" is ablest and takes agency away from the person experiencing it. (not a gripe with you of course! A gripe around underlying societal ablism!)
Hi Hannah, Gyn/Ob trainee here (even though not from the UK), about your question of having PCO or PCOS... You need to have at least 2 out of 3 symptoms to have PCOS: irregular periods; cysts in your ovaries and higher levels of testosterone (you can assess this with a blood test or infer it by symptoms such as acne, male-pattern balding or extra body/face hair growth). From what I remember of your videos, you have at least the first 2 symptoms, therefore I'd assume you have PCOS. Best of luck with your fertility journey!!
I’d definitely contact your GP about the private referral letter. That’s weird. Also I don’t know how you’re still so calm, good on you, I’d be angry with the system!
that is why is better to go private in the first place. waiting moths for an appointment?? I would have died twice if I or my family members didnt go to private. I'm amaze Hannah haven't done that.
@@ZairaBandy that's wonderful your familiy has the money and resources to do that, but sadly a lot of people don't, so going private is often a last resort xx take care
The Rotterdam Criteria for PCOS are 2 out of 3: 1) polycystic ovaries 2) longer cycles/no period 3) signs of hyperandrogenism like acne Or blood tests that show elevated androgens So that's probably why the doctor said that you have PCOS.
@@hannahwitton it's usually defined as cycles over 35 days or less than 9 cycles a year. You only need two of three for PCOS with the rotterdam criteria but unfortunately it's not especially well understood by many medical professionals. Having said this it doesn't make a significant difference to treatment, the use of metformin in PCOS is probably the only thing and the evidence is not amazing especially in lower bmi women.
i hit #2 and #3, and i was lucky enough to be diagnosed as a sixteen year old who had severe acne and extremely irregular periods which fed into low self esteem and still does sometimes
Sympathy for the frustration of medical admin. These are some thoughts I had while watching, to do with navigating the NHS and talking to doctors. They're kind of advice-y, if you don't want advice from strangers that's completely understandable, stop reading here. Try not to worry about seeming stupid if you ask too many questions in appointments. Doctors usually try to explain things as simply as possible to avoid confusing people with too much detail. If you have questions like the ones you mentioned that suggests you're ready for more detail, not that you're stupid. Seeing multiple GPs for a long term condition can create confusion. If you are similarly comfortable with both of them, it might be better to stick with the one who gave you the second referral because they seem to be more up to date with how the local fertility services work.
I’m in the US, but I also got nervous asking doctors questions or even feeling like I was taking up too much time from them. But I finally realized that it’s their job to care for me, and that if they haven’t explained something in a way I understand then that’s a problem that deserves to get fixed. I also feel like sometimes doctors have been in the field for so long that they lose touch with what a layperson does or doesn’t know about medical terms, and they either overcompensate or under compensate for that.
@@eliontheinternet3298 You're right, it's their job to explain things in a way you can understand, so they can help you make informed decisions. There's also a lot of verity in what kind of information is right for each lay person. People take on information in different ways and have different levels of background knowledge, so it's hard to have one standard explanation that will work well for everyone. Hannah had already done the interview with Mama Dr Jones so she was going in with more knowledge than the average person and was ready for more detail more quickly.
Agreed, doctors/specialists are here to help and as long as you’re not going over the appointment time, they should be okay to answer your questions. I now go fully prepared to my specialist appointments with notes/dot points describing all my symptoms, my medical background an a list of questions. Some doctors appreciate that I’m on top of things and prepared, some (GPs mostly) give me a dirty look and probably think I’m hypercondriac or something. Honestly I don’t care anymore as I’ve been dismissed too many times before and my symptoms only got worse because of it. I’m only interested in getting answers and figuring out a pain management plan.
Seeing her announcement today that she is pregnant it makes me to happy that while she was filming these clips in August she was probably already pregnant but didn't know it.
Hi Hannah! Our stories are really similar! I’ve got Crohn’s disease and a stoma, and have been on my fertility ‘journey’ (yuck!) for over three years now. I massively related to the frustration of dealing with all of the admin and contradictory statements…..! We’ve had every test in the book and two rounds of IVF (6 transfers), so if you ever want to chat to someone who’s been through it, I’m always more than happy to chat xx
Same, been trying for 3 and a half years, got a permanent stoma from UC and also had rectum removed, and have had 3 failed IVF transfers with 4 frozen blastocysts ready and waiting for yet another round soon... and yet they say our infertility is unexplained, so weird and frustrating.
Ive worked for the NHS for 7 years now and the one thing its taught me is to always, ALWAYS be proactive in any referrals that get made. Always call earlier than the dates they give you and always make sure they have recieved them. PS: for most NHS referrals you can request to go to ANY hospital in the country that has a shorter waiting time, this includes any private hospitals with NHS contracts, which includes Spire Healthcare, BMI and Nuffield
Hi Hannah! I love how positive you are throughout this entire rigamarole, keeping a sunny outlook is huge when faced with so much uncertainty. I, too, share your medical admin frustrations; My healthcare is via the US military, and my understanding is it's not too dissimilar to the NHS. The fact that my diagnostic testing is taking multiple doctors/facilities and nearly a year to figure out, BEFORE any treatment can begin, is wild. But what else can you do? Just keep swimming! Thanks again for sharing your journey with the world.
the cysts described in your ultrasound report are the kind associated with PCOS, they call it the string of pearls effect. I was diagnosed with PCOS at 19, so I've got some experience with it haha
They didn’t tell me what type of cysts I have in my ultrasound, just that both of my ovaries are polycystic. I don’t have any other symptoms of PCOS and all my hormone blood work is normal so I don’t meet diagnostic criteria. It’s so confusing 😩
i got it diagnosed at 15, unfortunately my doctors were a bit shit. i got no information as to what they actually were or what kind of medication and treatment i could get. i was told lose weight - that’s it. in fact that’s pretty much what i’ve been told at every doctors appointment i’ve been to
I have PCOS and diagnosed at 28. I have 2 boys both through IVF and I've had a rough time trying for our third. My fertility clinic has always said that fertility is not related to weight and vice versa. Please don't think that your fertility is a number on a scale. PCOS makes fertility hard. Please be kind to yourself and it's a marathon not a sprint, unfortunately
@@lucymariposa I'm sorry you've had bad doctors, I know how frustrating that is. The weight bit has nothing to do with fertility, but diabetes. PCOS increases your risk of developing diabetes, and so does being overweight, but losing weight will not actually help with anything. Doctors who tell you otherwise are either not keeping up with medical research, or are just not nice. I struggle with my weight so I've been told that kind of thing too, I am fortunate now to have a good healthcare team who actually explain things to me.
I've been watching all of your videos as my boyfriend and I have also tried for a while. I had polycystic ovaries as well and a looong cycle and was worried it wouldn't work for us. Now 33 weeks pregnant. I'm so positive it'll all work out for you, too. ❤️
I just wanted to cry for you at the 15 minute mark after your GYN appt. I'm so frustrated for you! But I loved watching you get excited about the measurements. Hang in there.
I had an appointment with an NHS consultant, during which he asked if I eat well and I said "probably not the best but relatively healthy". In the letter he wrote to my GP it said "Rachel eats a healthy and Mediterranean diet"......errrrr only when I'm on a Mediterranean holiday! Absolutely no idea where that came from, perhaps a copy and paste from another letter? Bit worrying if that's the case! You are being so incredibly patient! Good luck with the rest of your journey x
I know it's definitely a blessing to have NHS and not have to pay for things, but it is exhausting to be sent on like a ferris wheel where you just have to keep chasing up people and you have to ask the RIGHT questions or else you won't get the answers your actually looking for and you sort of have to do lots of research on your own so that you come in prepared to be like "this is what I think I need based on these symptoms" and sometimes it just feels like you're doing their job for them. It's sad because obviously it's not really the GPs (etc) fault because I think this could all be avoided if the NHS was funded properly. I think most GPs probably also don't really know all the ins and outs of the system themselves. It's just exhausting when you sort of wait around for an appointment that wasn't needed...
Yeah it's similar in our (public healthcare system) country. Luckily I havent had to go down the fertility route, but it's all chaos anyway. The back and forth circles of calling different doctors that send you back to the one you came from ... Having to pay for meds even though you have both basic and additional health insurance ... I mean I am still happy with the knowledge that if i ever have a horrible disease, I wont go bankrupt from it but the bureaucracy just sucks the life out of you
Thank you for sharing your journey so publicly. So many of us struggle with infertility and it is SUCH a process. I'm on my third IUI right now and if this one doesn't work we're switching to IVF.
I did a full year of comic cycles to try and conceive after my PCOS diagnosis I also have Ulcerative Colitis. The clocks made me crazy and as it didn’t work I was told to give up until I could afford IVF. Well I would never be able to afford it so I gave up. 2.5 years later I fell pregnant naturally to mine and my doctors surprise. I wish you all the luck in your fertility journey
The difference from the difficulty of taking your blood from your finger between you and Dan is coming from the fact that women have generally less blood in their extremities than men. That's also the reason why women have generally colder hands and feets than men Wish you all the best for the rest of your journey Hannah
hey so around 23:39 when you’re going through the referral letter, they don’t rewrite new ones for each patient they just copy and paste similar ones from other people, so there’s usually some parts that are left from the last person 😂 I had one written and it used he/him pronouns throughout (I go by she/her and I’m a cis woman) but more worryingly it said I was 48 (I’m 21 😂) which is why I know cause I emailed asking if they were aware of my actual information, and they said not to worry too much about the finer details in the letter cause they have your file on hand so they can double check everything anyway, the letters are mostly a formality, it makes you wonder why we still use them at all
Reasons why I take my mother to all of my appointments is because she’s my biggest advocate when I’m to shy or stupid to advocate for myself properly. In my last gynaecologist appointment I could only go in by myself because of covid but I called my mum and put her on loud speaker so she was able to ask questions as well. I’ve gone with a friend to her appointment as well so I could do the same thing for her because she doesn’t have a mum anymore
My thought when you are going through all the data in the papers, is «maybe its time to call up MamaDrJones again» 😄 Its oktober now, and I hope that means that either way you have gotten to your appointment either way, or soon will (october is not done yet). And I would also be very excited to have some measuerments 😄 though its way to painful to ask whenever I am doing an ultrasound, I am all about getting the scan over with as soon as possible. Joy of endomteriosis 😅😬
Hannah most of the video: Frustrated, struggling to stay positive, occasionally losing patience with the whole process Hannah when she finds out she has her uterus measurements: OMG THIS IS THE BEST DAY EVER EVERYTHING IS WONDERFUL WOW STATS
The uterus is usually the size of one's fist (I've been told). Sounds about right! Please don't consult again with the other GP who gave you misleading info. Stick with the one person, whether they're in the clinic that day or not. Sending lots of hugs - it takes courage and the kind of patience that would make a saint swear - as you & Dan know best!! PS - Hon, not only is it your series - it's your LIFE! Thank you for sharing so openly all that you have and will.
You'll get there! I also have pcos. We kept being told we couldn't get a referral until a year of trying either. Now after 3 rounds of fertility treatments I'm 7 weeks pregnant. Don't give up!
When you were explaining that you went to the wrong place for the gynaecologist referral and talking about everything being confused and messed up, I just wanted to give you a big hug. I'm sorry you're going through this, I can't imagine how shitty it must be, I'm sorry the medical system is messing you about like that, I hope things get sorted soon and before you know it you'll have a beautiful little baby ❤️💛❤️💛
I have PCOS and hypothyroidism. I went through an infertility clinic in the US. All I needed for my PCOS was the clomid shot to induce ovulation. (I chose to do the IUI just to speed up my chances.) I now have 3 beautiful kids. There are ways to get pregnant with PCOS. Wishing you two all the best. 💜
As someone with crohns and ptsd around hospitals for many reasons, I second the advocating for yourself, I nearly died at fifteen because I didn’t. Don’t be afraid to ask for second opinions, referrals or to change consultants or hospitals if need be. And if you have specific requirements due to your illness don’t feel rude or a burden for asking. Especially if you don’t ‘look ill’ or it comes in flare ups you can get overlooked, if you are a young female presenting person you might get treated differently and if you have been disrespected or your medical care has been subpar (or enter expletive here) don’t be afraid to take recourse. And if your a parent your a parent no matter how old your child is and when they are sick they may need you to help advocate for them, however when doctors asked my mum and dad when he was alive questions about me even though I was an adult and right there, weird and not ok. And the monumental difference between how they treat me a young female looking person to my dad older in a business suit was vast. Also when he complained of pain he was treated like a king I was treated like an inconvenience that was making a big deal about a tummy ache (did I mention I was in fact dying) and even though this happened again (sepsis) and was arguably scarier because it happened so quick I dealt with that a lot better because people listened to me and believed me and acted accordingly which saved my life. So please let’s normalise not making assumptions about people or there health on how they look and not treating patients differently because of age or gender or making assumptions about diagnosis and level of pain. Sorry about the rant but I’m sure I’m not the only one and to all those that know I’m sorry and you are strong and not because you don’t cry or feel sad or don’t ask for help or carry on/stiff upper lip crap but because you are here and you are getting through this minute and sometimes that takes all the strength you have. Hope everyone’s doing ok and staying safe, happy and healthy. Please let’s all try to be kind to one another. All my love xxxx
Hello Hannah! Med student here from the US. I have my gynecology exam on Friday, but instead of studying I'm watching you... which I suppose is studying haha :) But anyway, here's what I know about PCO vs PCOS. PCO is just a finding on ultrasound that shows multiple cysts, or little bubbles, in your ovaries. That can frequently be normal. PCOS, on the other hand, has the cysts *in addition to* symptoms like irregularities in your menstrual cycle and acne, for instance. And in PCOS, when you do blood tests, you'll see things like elevated testosterone and elevated estrogen. Does that make sense? If you (or anyone else in the comments) has any questions I'm happy to try my best to answer them! Like I said, I'll consider it studying :)
This video was basically me 6-12 months ago! We did the STI home kit (I wasn’t barely even able to get blood out of my finger at all… had to abandon that) we did a private clinic webinar… did all the phoning and blood tests… lots of waiting… we were about to try a round of IVF privately after 2yrs3months ttc (we would have had to wait 3 years on NHS), and then 5 days later I found out I was pregnant! I am now 9 weeks 🤞🤞🤞Good luck with everything!! Thank you for raising awareness! It’s so frustrating to have appointments when you kind of feel like they are rushing through it but you have loooaaads you want to ask! I feel your pain.
This is barely relevant, but after seeing you do the blood test I couldn't not talk about this. So me and my family are part of the big covid survey that's being done in the UK where we're getting most of our stats from. We've been part of it for over a year now, we're very happy to be doing it, my brother and I both have chronic illnesses so we're used to blood tests, it's all fine, etc., etc. A few months ago, however, they extended the survey - it was only supposed to be for a year - so everything had to be re-consented to and they took the opportunity to change how the blood was taken from the typical needle in arm to the finger prick. We think 'this is fine, it'll be really quick, in and out, great'. I cannot explain to you the blood bath that was our kitchen after the first one. No blood wanted to leave anyone's finger, and when it did it was NOT GOING IN THAT FUCKING TUBE NO SIR. I am not exaggerating when I say that it took at least 45 minutes to fill the tubes, and when we were done the place was *covered* in blood. Pouring down everyone's hands, on the worktop, on the table, on the floor, literally *on the dog*. We milked our hands like no-one's goddamn business and when a drop would finally come out it did everything it possibly could to avoid going in the tube. My dad works from home and he refuses to try it again out of sheer necessity because getting 10ml of blood takes so long that *his work was suffering*. As I said, barely relevant, but I clearly needed to vent so cut me some slack, okay.
Hannah you need to get one GP who you always see for everything (and not the one who wouldn't refer you until it had been a year) - it significantly improves your care outcomes to have one person who you see for everything! Also they would be able to help you navigate all the referrals and specialists better if they always see you so they know what's going on better. Good luck!
@@alicefish8348 under normal circumstances yes, under Hannah's circumstances no. Hannah has a much shorter time limit than average on when she can have babies due to needing a second surgery to deal with her stoma & rectum and she also has multiple known reasons why it would be difficult for her to convince. Waiting a year wasn't the best call in her circumstances (even though for most people it would be).
Yes! as someone with a chronic illness, my mother, and now to some extent me, as I am a teenager, have spent so much time making appointments, and staying on hold, going through patient portals, collecting folders of paperwork, checking on the doctors that were supposed to contact you… It’s a lot.
Hi Hannah - I appreciate this series so much. I'm sure the last thing you wanted to do when you got out of the disappointing doctors appt was to update us but you did anyway and I know a lot of us appreciate it. Take care x
I’ve been trying for four years but during that time my life has been a rollercoaster ride so haven’t even looked into doctors yet so watching this has been eye opening thank you for documenting this journey it’s extremely helpful
Our situation is very similar to yours and Dan's although I have already had rectum removal surgery and it has totally messed up my tubes, I have hydrosalpinx on both sides so I have to have them both removed in December, before we can start IVF. The relief when I found out they were both affected was huge because I was finally able to not go through the 'am I pregnant?' thing every month. It took us a year of being under the fertility clinic, loads of ultrasounds and an MRI to find this out. Before I just thought I wasn't thinking positively enough, ridiculous as that sounds. I now know it isn' t my fault. Or my partners. It kind of warms my heart that there is someone else in the ether who understands this journey and is also colon-less. I feel like I'm sharing this with you because I know you... even though I don't... but I know you understand the insanity of it all! If you see what I mean... I have a lot of great, supportive and caring friends but they can never quite get it. I hope by now you might have had that October appointment and you have a plan of action!
My wife and I had to go through the fertility/IVF process here in the US, no fun, good luck to you. Worked out well for us. Sounds like a lot of hoops you folks have to jump through. Well wishes.
I LOVE THIS! I'm studying health policy in the US, and it's SO FUN to learn about the NHS process. Best wishes on your fertility journey, and thank you so much for your work on making reproductive health less taboo and more fascinating!
When Hannah said "Part of me is normal!!!" I felt exactly the same! Also your NHS is very similar in all the run around admin advocate for yourself if you even can, as Australia's medicare. It suuucks.
Hi hannah, I've been following you for some time now. And I know how much you want a family and finding out all this stuff in this episode is making me hope that your getting closer to have you long awaited family. I have a health condition that's long term but nothing as bad as you've had to deal with. My illness is Eczema which is very common but the cause of my Eczema is very rare, its caused by the ultra violet light in the sun, had it since birth so I've had to use the NHS for years to get medication and different tests to manage my illness so I totally get what you're trying to explain about the NHS, my mum was my advacate as a child but now it's all me because I'm 33yrs. I really do hope you get your wishes granted and that you get chance to become a mother before anything bad happens to your bowels, I think your incredible for going through everything that you've had to go through and being able to stand proud and happy, because like me my illness has had its effects on me as a person, I was badly bullied through school so my self esteem and confidence has been negatively effected my all that. I admire how far you've come in your life when you've had such a bad time with illness trying to beat you down, you truly are an incredible and brave woman and I wish you both the best of luck with trying to grow as a family, so much love to you, from Athena ❤️❤️❤️
I feel like I manifested this video into my life today… got my implant out this morning as going to start TTC soon and have been rewatching your older hormone diaries videos this afternoon, go to look at my subscriptions and boom, this video was sat there waiting
TW: Blood - for those who struggle to do these prick blood tests - I really recommend doing some star jumps or a job on the spot as well as hydrating lots. I'm becoming an expert and it makes such a difference.
I have PCOS and my NHS fertility process was really quite quick, from getting the initial referral to the fertility clinic to getting the drugs was about 5-6 months, and then it took me 2 rounds of drugs to get pregnant. Hope whichever route you take gets you there quickly xx
So frustrating when you were refused the fertility referral, went to Gyne and was told you should have gone to the fertility clinic, and are now at the bottom of the waiting list!! Mental health is the same in the NHS. I wish our government properly funded 'non-essential' branches of medicine. (By that I mean, if you have a cancer referral they aim to see you within two weeks, but fertility and mental health don't seem to matter to the NHS when they're pushed for money and staff.)
Oh my god, I am sure glad I'm an American. If I want to see ANY Doctor I just call their office and make an appointment, no waiting lists, no referrals necessary. If it Is an emergency, I just go the an emergency room, no waiting, no hassle. Or just dial 911 and sit back, they will take care of everything immediately. 24x7.
A blood test appointment.... Ha ha ha too funny... But also sad that anyone would think that is normal. Here in America: if my Doctor need a blood test, he takes blood in his office than calls me with the test results.
@@megadramatic Same, I can't imagine having to go into extreme debt because of an illness or emergency. American healthcare may be quick but it is only for the privileged/rich and that is very sad.
Hey Hannah, as somebody, who works with numbers and sizes often and can make an image out of it pretty easily, maybe it's a tip for you to fill an empty balloon with some flour and form it to the 6.9cm of length, 2.9cm of depth and 3.3cm of depth in the other direction - a bit like a pear - like a uterus. ;)) And then you have a 3d object that symbolises the measurements of your uterus ;))
I have a genetic disease (Marfan Syndrome) and live in the US. I passed it on to my oldest son (he's now 23) but not my youngest. I realized when I was diagnosed when I was 30, that I had to be an advocate for my health and when my son was diagnosed, that I would have to be his advocate too. It can be exhausting but it is so important. I wish you all the best always!
Currently 22 weeks pregnant really feeling your health admin struggles! I have so many letters and pieces of paper with different appointments on them all over my house and I’ve never made so many phone calls in my life. Trying to get scans booked (then rebooked due to Covid isolation), get my flu vaccine and now starting to sort out mat leave is such a struggle. So much paperwork!!
Hi Hannah, fertility Acupuncturist here! So you do have PCOS. A few people explained below that you need two out of three things to be diagnosed. One is irregular/long cycles more than 35 days, two is cysts on your ovaries, and the third is high androgen levels visible clinically through symptoms or identified through bloodwork. Because of your cysts on ultrasound and long cycles you qualify for diagnosis. Also fairly indicative of PCOS is high AMH levels, and a high LH to FSH ratio. Basically what this means is that each cycle your ovaries create follicles that house the egg to ovulate. Because of the hormone inbalance of PCOS the follicles stall in their maturation and ovulation is not completed on time such as in a regular 28 day menstrual cycle. They are technically not really cysts, But an accumulation of immature follicles that were not able to complete the ovulation process. Because of your history of scar tissue, you should get an HSG, which is a procedure where dye is injected into the uterus and fallopian tubes and an x-ray is taken to make sure that the dye spills out of the tubes indicating that they are open. I would recommend looking into a medication called letrozole, which is used often people with PCOS to encourage earlier ovulation. A gynecologist or a reproductive endocrinologist at a fertility clinic can prescribe this for you. Your uterine measurements are very normal, and this will fluctuate throughout your menstrual cycle so it is not always static. Your uterus will be much larger when you are closer to you period. Your lining also sounds very normal for where you were in your menstrual cycle. I would also recommend looking into the supplements myo-inositol, NAC, magnesium, and vitamin d. Although of course first speak to your doctor before starting anything. I talk about hormones a lot on my instagram @sea_of_qi_healing. Hope this helps!
I know youtubers hate recommendation comments, but I and others would be so grateful if you could cover sex anxiety/ how ptsd can play a roll in both kink and sex avoidance. Love your content keep up the good work!
So nice to have this bit on how difficult to can be to get medical care. Currently I've been trying to find a doctor in network who treats my rare autoimmune condition and of course all my other doctors won't do anything until that's treated and my insurance won't even talk to me and tell me what to file! Protip: if you have a prescheduled appointment call anyway and you might be able to get a sooner or more convenient appointment time.
Hey Hannah, I’m sorry no one has made this clear to you but hope this helps. I am a practice nurse (GP nurse) and to be confirmed with pcos you need to have two of the following; polycystic ovary confirmed on an ultrasound, irregular periods and high androgen levels ( which will need to be confirmed on a blood test e.g high testosterone) if you have two of these things this mean you have confirmed PCOS. Having pcos can mean you have infrequent ovulation which causes irregular periods which gives you less chances of trying to conceive each year, which is one of the main causes of infertility. Compared to people who are have regular periods and have predictable monthly ovulation. Ovaries measuring more than 10ml is consistent with pcos Hope this helps xx
Does the more than 10 mL ovary measurements need to apply to both ovaries for it to be consistent with PCOS? I have infrequent ovulation, with 6 to 8 cycles per year, and an ultrasound I had done in 2018 showed that one ovary measured 18 mL with a huge corpus luteum, while the other ovary was just 3 mL with no apparent abnormalities 🤔
@@ShirinRose it can apply simply to one ovary, but then there is also a chance that you ovulate from one ovary more. However seeing you don’t have monthly cycles, good chance u could have pcos, maybe try having blood test for ur hormones, ensure thyroid is also included for confirmation by doctor that you are officially given that diagnosis. X
So recognizable! I have a disability and we're are trying since January. I also have symptoms of endometriosis, so I got a referral for November. I feel a little less alone watching this. Luckily no friends who are having babies yet.
love the series, just an FYI one of the reasons that Dan's blood test was easier may be because he was more hydrated than you. There is a specific neurotransmitter that regulates your blood pressure and if you are well hydrated your blood vessels are not constricted, meaning the bloodflow will be stronger
I work in the andrology department (sperm stuff) at a fertility clinic in the US and it's so interesting to see the difficulty to access fertility treatments in other countries. We still have the recommended 12 month waiting period before pursuing treatment but it seems much easier to access this specialty in the US than the UK. Fertility is such an fascinating little niche in the medical world. I've learned so much and while it can be confusing (because we don't actually know *that* much) and heartbreaking, there is a great community for fertility patients and that's really rewarding.
Hi Hannah, I really feel you on the medical admin. I have a rare genetic condition and its genuinely a task to keep on top of. Currently trying to get an ADHD assessment and navigating that minefield is not fun. I know in the UK we are lucky to have the NHS, but that doesn't mean we can't speak up or air our frustrations when we don't feel we are being heard or getting the right information. We are allowed to be both grateful and disappointed.
It’s always so wild to read notes about yourself from a doctor. Like finding out how they describe you/your condition from their perspective/understanding.
I apprecaite this series so much. Im in Canada and have experienced 3 miscarriages (my most recent one last week). I hate that i had a third miscarriage but there is a bright side- apparently 3 is the magic number to pursue testing to see what is happening. A dr appt next week to find out next steps. Ouf. Sending all the love your way 💜💜
I am so sorry you're going through this. I can't imagine how difficult it must be to wait until you can get evaluated, but it might help to know that there us an actual reason for that. Just in in case this is not information you'd like, I'm putting it in the next paragraph. It might be upsetting, as it will discuss this very sensitive topic in a very clinical way. A lot of noticed pregnancies end in miscarriage, simply because there are so many things that need to go right for a pregnancy to go to term that statistically things are quite likely to go wrong every so often. Miscarriages where people noticed they were pregnant make up 8-25% of all pregnancies, depending on the study, but once you take into account all miscarriages before people notice they are pregnant that number skyrockets, as most of the things that absolutely need to go right happen in the first few weeks. Some papers cite it as being as high as 80% of all fertilizations. Now, statistically, your chances of having a second miscarriage after one are the same as after none, at about 20%. After a second, those odds go up to 28%, which is marginally higher. However, after the third one, they go beyond 40%, which indicates that there is far more likely to be something going on beyond the simple errors that often happen. Importantly, that 40% is if the cause isn't found and dealt with, as several causes of repeat miscarriage are completely treatable. It does mean though that after the third one, it is worth looking into what may be causing them.
Definitely would advise you to pick one of your GPs (whichever you prefer) and keep seeing the same one. It’s fine to see whoever when it’s one off, but I’ve definitely found it’s better to request the same named doctor when it’s an on-going issue. At my GP, the doctors can actually book the repeat appointments themselves, which is awesome.
Hey Hannah, I have PCOS, I was diagnosed at age 14-15. I had terrible periods as a teen and I was referred after no period for 8 months. I was quite lucky and being so young and at the appointment alone, they explained I had the pearl effect (my overies look like a pearl necklace curled up in a ball.) Which is a big symptom of pcos. I have had several fertility investigations at hospitals. Mostly when I was younger. Although I recently had a gyne scan for a different reason and the sonographer Argued ( arguing agressivly) that I wouldn't have PCOS because they have to wait 8 years from the point of first discovering PCO before they will diagnose PCOS in the NHS. I have obviously had this from my teenage years, I'm 27 now and they wrote up a full report that was sent to my doctor basically saying I needed to be informed of having PCOS. My doctor was very shocked when I replied with yes I know, it's been 14 years! However this would explain why your Getting conflicting advice from the various parts of the system. Hopefully you'll see this and you'll know. It's very likely you do have PCOS and all the symptoms you have match mine (other than my 8 month cycle in my teens). I hope this helps make your PCO/PCOS more clear.
Wishing both you and Dan all the very best in your fertility treatment, I hope it goes well. Me and my wife had the same strange and mad journey. Finally after some early miscarriage's and about five years it worked, and then again after another two and a half years. So two kids fantastic. So unlike the stage I called sex by numbers, keeping records trying to predict when and if ovulation would occur as she had very irregular periods, even longer gaps between them than yourself. Fortunately for her she does not have your bowel problems, I do instead, well Chron's but still a grotty bowel. Lots of love and best wishes Ray.
This video came in such a right time for me, so thank you! I've been having joint pain and fatigue for over a year trying to get a referal to a rheumatologist (nope). And the last two meeting with my doctor to get a referal to a pain clinic, having had one just today and being told it's really difficult to get one and she has do do (even) more tests. It totally feels like one step forward to steps backwards. I can't remember how many bloodtests I've taken, 5 different doctors, a physio, being asked is it my medication, my mental health? If you have more compex issues going to a gp isn's really the right place... Hope the best for you!
Hey dear! I know I’m a bit late to the game. I just wanted to encourage you to contact that OBGYN to do a follow up via phone call and ask all of those important questions. You have the right to know about your body and with working with a doctor they still can share an answer to your relative questions. Wishing you all the best on your journey!!!
Always ask all the questions. I work with doctors and some of them are useless at explaining in normal terms what’s going on with your body. It’s your appointment, try take as much use and info out of it.
If you go private, keep your NHS ticking over in the background. Some ccgs allow you to go back to NHS after a failed private and you will be grateful for that opportunity. I've had two rounds this year and the latest was the NHS round xx
I feel your frustration with the fertility clinic referral. Annoyingly the one piece of advise I heard is if you have ANY kind of fertility issue, you should demand from your GP that they refer you, even if you haven’t been trying for a year. And they should do that for you as you have an underlying condition that may cause you to not be able to get pregnant without medical intervention. Best wishes with it all though 💛
It’s very exciting to watch this video back knowing that you got pregnant during this time period! I’m very curious if you still had your appointments to find out what was going on or if those questions will remain unanswered for now .
"Something about my body is normal!" 😂 love that so much. When it comes to your body and health that really is the best. You want to be normal because that means everything is ok
Hi Hannah, I have so much sympathy for all the hoops you have to jump through. The NHS is amazing but the wait lists and referrals are crazy. I'm currently being investigated for endometriosis and it is taking so long. Its so frustrating, I just want to know what's going on 😪
The medical struggle is real! I've had such a hard time trying to get an autism assessment (which I will get the results of next week!) and to figure out my chronic pain. Always so frustrating, but just keep swimming!
Some medical vocabulary: A syndrome generally means that there is a few different things that you have that point towards one illness. In this case, 'polycystic ovary' only describes the appearance of your ovaries (they have many (poly) cysts). The ultrasound can only make observations about your ovary, but the ultrasound itself doesn't know what your cycle looks like, that's why they just describe the appearance, by saying PCO. "Polycistic ovary syndrome" indicates that you have multiple different things that indicate the illness polycistic ovary syndrome. This includes the cysts, but also irregular periods, indications of high testosterone (acne or hair on your face), and potentially some insuline resistance. You don't need to have all of them, but at least a few to be diagnosed with PCOS. Now the fun part is that some people have PCOS, but don't even have cysts on their ovaries. But because they have many of the other symptoms, it still means they have PCOS.
I'm diabetic - I can honestly say that with the finger pricks it depends on location, day, time, hydration. Sometimes I can barely get a drop out while othertimes I get blood absolutely everywhere
A good regular (singular) gp is soo important. I have had a few different ones and a good relationship with my current one had made so much difference to my health and conditions.
My GP wasn't concerned when I couldn't get pregnant but as soon as I called the doctor at the fertility clinic he immediately did blood work and looked at my tubes and uterus which is all free in Canada (yay). We did IUI and I got pregnant with my daughter 🙌🏻
Thanks for your raw honesty throughout this series and your content in general! I've become so much more comfortable in my sexuality since watching your content :)
I’m so glad to follow you! I am currently going through IUI! Male side infertility! It’s hard and emotionally draining! Looking forward to the happy outcome if we have successful round! Wish you luck ❤️
People usually go through phases where all their friends are getting married, and then all their friends are having kids/trying to become pregnant. I realize I'm going through something like that but with the people I watch on UA-cam. lol.
hahaha same!
I swear! I have like 5 subscriptions that are either pregnant, trying to get pregnant, or on maternity leave. Baby boom!
@@hannahwitton Just so you know PCO is a symptom and PCOS is the condition. Almost none of the cysts are going to be multiple and bilateral, except the follicular cysts that appear with PCOS. Or at least that is what I have been told in my 20+ years of dealing with PCOS.
@@hannahwitton Also you have the necessary 2 out of 3 criteria for PCOS, at least by the US standards.
Same
In light of today's announcement, its kinda fun watching this knowing you are pregnant in most of it and just didn't know! (or didn't tell us anyway) Congratulations!
You keep saying "it's fine" throughout the video in reference to NHS buerocracy and doctors delaying your access to healthcare through mistakes, but honestly? It's really not fine. Going around in referral circles and long waitlists and useless appointments that only tell you that you're in the wrong place are serious issues and I hope that you have far better luck at the fertility clinic.
I’m so glad someone finally said it 👏🏼👏🏼👏🏼
Thank you! I couldn't help but feel sorry for Hannah having to go though this bureaucratic hell. The system is ridiculous.
You can see after the gynae appt 13:00 ish, the sadness and frustration, and my heart goes out to her. Also on a fertility journey and had many issues with clinics and gyn.
I was thinking the same! It seems so frustrating! Good luck with your journey!
"Sorry to leave you on that cliffhanger, but this is my series, and I can do what I want!" 🤣 💖
As a medical professional: Suffering from xyz is just standard wording used for any condition patient may have. And yes. We do use silly phrases often. :D
Lots of love.
Was just gonna say this. "Suffering from" just means "has an illness/symptom" but fancier
Like when we write “complains of pain” it doesn’t mean we think you’re whining.
As a patient: can you please stop doing that?
@@wiebelziel oh get over yourself
This is interesting insight but I think there is room here to consider how ablest language is embedded into standard practise. Some people may be suffering, some may not. The condition itself doesn't decide, the patient does , and the idea that anything outside of being completely able-bodied is "to suffer" is ablest and takes agency away from the person experiencing it.
(not a gripe with you of course! A gripe around underlying societal ablism!)
Hi Hannah, Gyn/Ob trainee here (even though not from the UK), about your question of having PCO or PCOS... You need to have at least 2 out of 3 symptoms to have PCOS: irregular periods; cysts in your ovaries and higher levels of testosterone (you can assess this with a blood test or infer it by symptoms such as acne, male-pattern balding or extra body/face hair growth). From what I remember of your videos, you have at least the first 2 symptoms, therefore I'd assume you have PCOS.
Best of luck with your fertility journey!!
I’d definitely contact your GP about the private referral letter. That’s weird. Also I don’t know how you’re still so calm, good on you, I’d be angry with the system!
that is why is better to go private in the first place. waiting moths for an appointment?? I would have died twice if I or my family members didnt go to private. I'm amaze Hannah haven't done that.
@@ZairaBandy that's wonderful your familiy has the money and resources to do that, but sadly a lot of people don't, so going private is often a last resort xx take care
@@ZairaBandy most people wouldn’t wait months for an appointment if they were in danger of serious illness. fertility is not urgent in most cases
The Rotterdam Criteria for PCOS are 2 out of 3: 1) polycystic ovaries 2) longer cycles/no period 3) signs of hyperandrogenism like acne Or blood tests that show elevated androgens
So that's probably why the doctor said that you have PCOS.
ah perhaps! I hit 1 and 2 of those!
@@hannahwitton it's usually defined as cycles over 35 days or less than 9 cycles a year. You only need two of three for PCOS with the rotterdam criteria but unfortunately it's not especially well understood by many medical professionals. Having said this it doesn't make a significant difference to treatment, the use of metformin in PCOS is probably the only thing and the evidence is not amazing especially in lower bmi women.
Another sign of hyperandrogenism is too much hair growth in "male patterns", like some beard/moustache hair. Or more hair on your chest.
i hit #2 and #3, and i was lucky enough to be diagnosed as a sixteen year old who had severe acne and extremely irregular periods which fed into low self esteem and still does sometimes
Sympathy for the frustration of medical admin.
These are some thoughts I had while watching, to do with navigating the NHS and talking to doctors. They're kind of advice-y, if you don't want advice from strangers that's completely understandable, stop reading here.
Try not to worry about seeming stupid if you ask too many questions in appointments. Doctors usually try to explain things as simply as possible to avoid confusing people with too much detail. If you have questions like the ones you mentioned that suggests you're ready for more detail, not that you're stupid.
Seeing multiple GPs for a long term condition can create confusion. If you are similarly comfortable with both of them, it might be better to stick with the one who gave you the second referral because they seem to be more up to date with how the local fertility services work.
I’m in the US, but I also got nervous asking doctors questions or even feeling like I was taking up too much time from them. But I finally realized that it’s their job to care for me, and that if they haven’t explained something in a way I understand then that’s a problem that deserves to get fixed. I also feel like sometimes doctors have been in the field for so long that they lose touch with what a layperson does or doesn’t know about medical terms, and they either overcompensate or under compensate for that.
@@eliontheinternet3298 You're right, it's their job to explain things in a way you can understand, so they can help you make informed decisions. There's also a lot of verity in what kind of information is right for each lay person. People take on information in different ways and have different levels of background knowledge, so it's hard to have one standard explanation that will work well for everyone. Hannah had already done the interview with Mama Dr Jones so she was going in with more knowledge than the average person and was ready for more detail more quickly.
Agreed, doctors/specialists are here to help and as long as you’re not going over the appointment time, they should be okay to answer your questions. I now go fully prepared to my specialist appointments with notes/dot points describing all my symptoms, my medical background an a list of questions. Some doctors appreciate that I’m on top of things and prepared, some (GPs mostly) give me a dirty look and probably think I’m hypercondriac or something. Honestly I don’t care anymore as I’ve been dismissed too many times before and my symptoms only got worse because of it. I’m only interested in getting answers and figuring out a pain management plan.
I would tend to agree with both of these points
Seeing her announcement today that she is pregnant it makes me to happy that while she was filming these clips in August she was probably already pregnant but didn't know it.
Hi Hannah! Our stories are really similar! I’ve got Crohn’s disease and a stoma, and have been on my fertility ‘journey’ (yuck!) for over three years now. I massively related to the frustration of dealing with all of the admin and contradictory statements…..! We’ve had every test in the book and two rounds of IVF (6 transfers), so if you ever want to chat to someone who’s been through it, I’m always more than happy to chat xx
Same, been trying for 3 and a half years, got a permanent stoma from UC and also had rectum removed, and have had 3 failed IVF transfers with 4 frozen blastocysts ready and waiting for yet another round soon... and yet they say our infertility is unexplained, so weird and frustrating.
Suffering is often a term used in medical/ social care that basically tries to humanise ‘has been diagnosed with’
Ive worked for the NHS for 7 years now and the one thing its taught me is to always, ALWAYS be proactive in any referrals that get made. Always call earlier than the dates they give you and always make sure they have recieved them.
PS: for most NHS referrals you can request to go to ANY hospital in the country that has a shorter waiting time, this includes any private hospitals with NHS contracts, which includes Spire Healthcare, BMI and Nuffield
Imagining a referal letter with the phrase „the patient is frustrated with her PCO“ made me smile.
Omg watching this after finding out you‘re pregnant. Congraaats ❤️😍❤️
Hi Hannah! I love how positive you are throughout this entire rigamarole, keeping a sunny outlook is huge when faced with so much uncertainty. I, too, share your medical admin frustrations; My healthcare is via the US military, and my understanding is it's not too dissimilar to the NHS. The fact that my diagnostic testing is taking multiple doctors/facilities and nearly a year to figure out, BEFORE any treatment can begin, is wild. But what else can you do? Just keep swimming! Thanks again for sharing your journey with the world.
the cysts described in your ultrasound report are the kind associated with PCOS, they call it the string of pearls effect. I was diagnosed with PCOS at 19, so I've got some experience with it haha
They didn’t tell me what type of cysts I have in my ultrasound, just that both of my ovaries are polycystic. I don’t have any other symptoms of PCOS and all my hormone blood work is normal so I don’t meet diagnostic criteria. It’s so confusing 😩
i got it diagnosed at 15, unfortunately my doctors were a bit shit. i got no information as to what they actually were or what kind of medication and treatment i could get. i was told lose weight - that’s it. in fact that’s pretty much what i’ve been told at every doctors appointment i’ve been to
I have PCOS and diagnosed at 28. I have 2 boys both through IVF and I've had a rough time trying for our third. My fertility clinic has always said that fertility is not related to weight and vice versa. Please don't think that your fertility is a number on a scale. PCOS makes fertility hard. Please be kind to yourself and it's a marathon not a sprint, unfortunately
@@lucymariposa I'm sorry you've had bad doctors, I know how frustrating that is. The weight bit has nothing to do with fertility, but diabetes. PCOS increases your risk of developing diabetes, and so does being overweight, but losing weight will not actually help with anything. Doctors who tell you otherwise are either not keeping up with medical research, or are just not nice. I struggle with my weight so I've been told that kind of thing too, I am fortunate now to have a good healthcare team who actually explain things to me.
I've been watching all of your videos as my boyfriend and I have also tried for a while. I had polycystic ovaries as well and a looong cycle and was worried it wouldn't work for us. Now 33 weeks pregnant. I'm so positive it'll all work out for you, too. ❤️
I just wanted to cry for you at the 15 minute mark after your GYN appt. I'm so frustrated for you! But I loved watching you get excited about the measurements. Hang in there.
Seeing everything that you’re going through makes potential (in)fertility journeys a little less scary, thanks for sharing!
I had an appointment with an NHS consultant, during which he asked if I eat well and I said "probably not the best but relatively healthy". In the letter he wrote to my GP it said "Rachel eats a healthy and Mediterranean diet"......errrrr only when I'm on a Mediterranean holiday! Absolutely no idea where that came from, perhaps a copy and paste from another letter? Bit worrying if that's the case!
You are being so incredibly patient! Good luck with the rest of your journey x
I’ve just seen your announcement and wow! i am so happy for you and dan! you are going to be lovely parents. congratulations Hannah! x
I know it's definitely a blessing to have NHS and not have to pay for things, but it is exhausting to be sent on like a ferris wheel where you just have to keep chasing up people and you have to ask the RIGHT questions or else you won't get the answers your actually looking for and you sort of have to do lots of research on your own so that you come in prepared to be like "this is what I think I need based on these symptoms" and sometimes it just feels like you're doing their job for them. It's sad because obviously it's not really the GPs (etc) fault because I think this could all be avoided if the NHS was funded properly. I think most GPs probably also don't really know all the ins and outs of the system themselves. It's just exhausting when you sort of wait around for an appointment that wasn't needed...
Yeah it's similar in our (public healthcare system) country. Luckily I havent had to go down the fertility route, but it's all chaos anyway. The back and forth circles of calling different doctors that send you back to the one you came from ... Having to pay for meds even though you have both basic and additional health insurance ... I mean I am still happy with the knowledge that if i ever have a horrible disease, I wont go bankrupt from it but the bureaucracy just sucks the life out of you
Thank you for sharing your journey so publicly. So many of us struggle with infertility and it is SUCH a process. I'm on my third IUI right now and if this one doesn't work we're switching to IVF.
I did a full year of comic cycles to try and conceive after my PCOS diagnosis I also have Ulcerative Colitis. The clocks made me crazy and as it didn’t work I was told to give up until I could afford IVF. Well I would never be able to afford it so I gave up. 2.5 years later I fell pregnant naturally to mine and my doctors surprise.
I wish you all the luck in your fertility journey
The difference from the difficulty of taking your blood from your finger between you and Dan is coming from the fact that women have generally less blood in their extremities than men. That's also the reason why women have generally colder hands and feets than men
Wish you all the best for the rest of your journey Hannah
hey so around 23:39 when you’re going through the referral letter, they don’t rewrite new ones for each patient they just copy and paste similar ones from other people, so there’s usually some parts that are left from the last person 😂 I had one written and it used he/him pronouns throughout (I go by she/her and I’m a cis woman) but more worryingly it said I was 48 (I’m 21 😂) which is why I know cause I emailed asking if they were aware of my actual information, and they said not to worry too much about the finer details in the letter cause they have your file on hand so they can double check everything anyway, the letters are mostly a formality, it makes you wonder why we still use them at all
I am Not sure know what other area of any other job you could make these mistakes and get away with it lol
Reasons why I take my mother to all of my appointments is because she’s my biggest advocate when I’m to shy or stupid to advocate for myself properly. In my last gynaecologist appointment I could only go in by myself because of covid but I called my mum and put her on loud speaker so she was able to ask questions as well. I’ve gone with a friend to her appointment as well so I could do the same thing for her because she doesn’t have a mum anymore
My thought when you are going through all the data in the papers, is «maybe its time to call up MamaDrJones again» 😄 Its oktober now, and I hope that means that either way you have gotten to your appointment either way, or soon will (october is not done yet). And I would also be very excited to have some measuerments 😄 though its way to painful to ask whenever I am doing an ultrasound, I am all about getting the scan over with as soon as possible. Joy of endomteriosis 😅😬
I love that you're taking us on this journey with you, Hannah. It's a breath of fresh air to see this side of medicine talked about so frankly.
Hannah most of the video: Frustrated, struggling to stay positive, occasionally losing patience with the whole process
Hannah when she finds out she has her uterus measurements: OMG THIS IS THE BEST DAY EVER EVERYTHING IS WONDERFUL WOW STATS
The uterus is usually the size of one's fist (I've been told). Sounds about right! Please don't consult again with the other GP who gave you misleading info. Stick with the one person, whether they're in the clinic that day or not. Sending lots of hugs - it takes courage and the kind of patience that would make a saint swear - as you & Dan know best!! PS - Hon, not only is it your series - it's your LIFE! Thank you for sharing so openly all that you have and will.
You'll get there! I also have pcos. We kept being told we couldn't get a referral until a year of trying either. Now after 3 rounds of fertility treatments I'm 7 weeks pregnant. Don't give up!
Fingers crossed for you that you have a healthy pregnancy and get a happy, healthy baby 🥰
When you were explaining that you went to the wrong place for the gynaecologist referral and talking about everything being confused and messed up, I just wanted to give you a big hug. I'm sorry you're going through this, I can't imagine how shitty it must be, I'm sorry the medical system is messing you about like that, I hope things get sorted soon and before you know it you'll have a beautiful little baby ❤️💛❤️💛
I have PCOS and hypothyroidism. I went through an infertility clinic in the US. All I needed for my PCOS was the clomid shot to induce ovulation. (I chose to do the IUI just to speed up my chances.) I now have 3 beautiful kids. There are ways to get pregnant with PCOS. Wishing you two all the best. 💜
As someone with crohns and ptsd around hospitals for many reasons, I second the advocating for yourself, I nearly died at fifteen because I didn’t. Don’t be afraid to ask for second opinions, referrals or to change consultants or hospitals if need be. And if you have specific requirements due to your illness don’t feel rude or a burden for asking. Especially if you don’t ‘look ill’ or it comes in flare ups you can get overlooked, if you are a young female presenting person you might get treated differently and if you have been disrespected or your medical care has been subpar (or enter expletive here) don’t be afraid to take recourse. And if your a parent your a parent no matter how old your child is and when they are sick they may need you to help advocate for them, however when doctors asked my mum and dad when he was alive questions about me even though I was an adult and right there, weird and not ok. And the monumental difference between how they treat me a young female looking person to my dad older in a business suit was vast. Also when he complained of pain he was treated like a king I was treated like an inconvenience that was making a big deal about a tummy ache (did I mention I was in fact dying) and even though this happened again (sepsis) and was arguably scarier because it happened so quick I dealt with that a lot better because people listened to me and believed me and acted accordingly which saved my life. So please let’s normalise not making assumptions about people or there health on how they look and not treating patients differently because of age or gender or making assumptions about diagnosis and level of pain. Sorry about the rant but I’m sure I’m not the only one and to all those that know I’m sorry and you are strong and not because you don’t cry or feel sad or don’t ask for help or carry on/stiff upper lip crap but because you are here and you are getting through this minute and sometimes that takes all the strength you have. Hope everyone’s doing ok and staying safe, happy and healthy. Please let’s all try to be kind to one another. All my love xxxx
Hello Hannah! Med student here from the US. I have my gynecology exam on Friday, but instead of studying I'm watching you... which I suppose is studying haha :) But anyway, here's what I know about PCO vs PCOS. PCO is just a finding on ultrasound that shows multiple cysts, or little bubbles, in your ovaries. That can frequently be normal. PCOS, on the other hand, has the cysts *in addition to* symptoms like irregularities in your menstrual cycle and acne, for instance. And in PCOS, when you do blood tests, you'll see things like elevated testosterone and elevated estrogen. Does that make sense? If you (or anyone else in the comments) has any questions I'm happy to try my best to answer them! Like I said, I'll consider it studying :)
Remember you don’t need to have polycystic ovaries on ultrasound to be diagnosed with PCOS! Remember the Rotterdam criteria.
This video was basically me 6-12 months ago! We did the STI home kit (I wasn’t barely even able to get blood out of my finger at all… had to abandon that) we did a private clinic webinar… did all the phoning and blood tests… lots of waiting… we were about to try a round of IVF privately after 2yrs3months ttc (we would have had to wait 3 years on NHS), and then 5 days later I found out I was pregnant! I am now 9 weeks 🤞🤞🤞Good luck with everything!! Thank you for raising awareness! It’s so frustrating to have appointments when you kind of feel like they are rushing through it but you have loooaaads you want to ask! I feel your pain.
Also I had a HyCoSy scan to check for blockages where they inject dye through your cervix, maybe you will have that too for the scar tissue question!
This is barely relevant, but after seeing you do the blood test I couldn't not talk about this. So me and my family are part of the big covid survey that's being done in the UK where we're getting most of our stats from. We've been part of it for over a year now, we're very happy to be doing it, my brother and I both have chronic illnesses so we're used to blood tests, it's all fine, etc., etc. A few months ago, however, they extended the survey - it was only supposed to be for a year - so everything had to be re-consented to and they took the opportunity to change how the blood was taken from the typical needle in arm to the finger prick. We think 'this is fine, it'll be really quick, in and out, great'.
I cannot explain to you the blood bath that was our kitchen after the first one. No blood wanted to leave anyone's finger, and when it did it was NOT GOING IN THAT FUCKING TUBE NO SIR. I am not exaggerating when I say that it took at least 45 minutes to fill the tubes, and when we were done the place was *covered* in blood. Pouring down everyone's hands, on the worktop, on the table, on the floor, literally *on the dog*. We milked our hands like no-one's goddamn business and when a drop would finally come out it did everything it possibly could to avoid going in the tube. My dad works from home and he refuses to try it again out of sheer necessity because getting 10ml of blood takes so long that *his work was suffering*.
As I said, barely relevant, but I clearly needed to vent so cut me some slack, okay.
Hannah you need to get one GP who you always see for everything (and not the one who wouldn't refer you until it had been a year) - it significantly improves your care outcomes to have one person who you see for everything! Also they would be able to help you navigate all the referrals and specialists better if they always see you so they know what's going on better.
Good luck!
It's NHS / evidence based to wait for a year though. They didn't do anything wrong there
@@alicefish8348 under normal circumstances yes, under Hannah's circumstances no. Hannah has a much shorter time limit than average on when she can have babies due to needing a second surgery to deal with her stoma & rectum and she also has multiple known reasons why it would be difficult for her to convince. Waiting a year wasn't the best call in her circumstances (even though for most people it would be).
Yes! as someone with a chronic illness, my mother, and now to some extent me, as I am a teenager, have spent so much time making appointments, and staying on hold, going through patient portals, collecting folders of paperwork, checking on the doctors that were supposed to contact you… It’s a lot.
Hi Hannah - I appreciate this series so much. I'm sure the last thing you wanted to do when you got out of the disappointing doctors appt was to update us but you did anyway and I know a lot of us appreciate it. Take care x
I recommend that you watch Taylor R's Journey it was heartbreaking for years, but now she's finally expecting her first son Thank G-d
And if i remember correctly she has pcos ?
@@StudioPepin yes she does
I was so happy that she finally succeeded
It's so nice seeing someone with a similar story and at a similar point in the journey on social media ❤
Watching this again after the announcement and oh my gosh I am so so happy for you both 😭 congratulations!!!! 💗
I’ve been trying for four years but during that time my life has been a rollercoaster ride so haven’t even looked into doctors yet so watching this has been eye opening thank you for documenting this journey it’s extremely helpful
I just got my first appointment with a gynie :) December 14th will be the day! Sending you and everyone good vibes
Our situation is very similar to yours and Dan's although I have already had rectum removal surgery and it has totally messed up my tubes, I have hydrosalpinx on both sides so I have to have them both removed in December, before we can start IVF. The relief when I found out they were both affected was huge because I was finally able to not go through the 'am I pregnant?' thing every month. It took us a year of being under the fertility clinic, loads of ultrasounds and an MRI to find this out. Before I just thought I wasn't thinking positively enough, ridiculous as that sounds. I now know it isn' t my fault. Or my partners. It kind of warms my heart that there is someone else in the ether who understands this journey and is also colon-less. I feel like I'm sharing this with you because I know you... even though I don't... but I know you understand the insanity of it all! If you see what I mean... I have a lot of great, supportive and caring friends but they can never quite get it. I hope by now you might have had that October appointment and you have a plan of action!
You're so strong! Your baby will be so proud in the future!
My wife and I had to go through the fertility/IVF process here in the US, no fun, good luck to you. Worked out well for us. Sounds like a lot of hoops you folks have to jump through. Well wishes.
I LOVE THIS! I'm studying health policy in the US, and it's SO FUN to learn about the NHS process. Best wishes on your fertility journey, and thank you so much for your work on making reproductive health less taboo and more fascinating!
When Hannah said "Part of me is normal!!!" I felt exactly the same! Also your NHS is very similar in all the run around admin advocate for yourself if you even can, as Australia's medicare. It suuucks.
Hi hannah, I've been following you for some time now. And I know how much you want a family and finding out all this stuff in this episode is making me hope that your getting closer to have you long awaited family. I have a health condition that's long term but nothing as bad as you've had to deal with. My illness is Eczema which is very common but the cause of my Eczema is very rare, its caused by the ultra violet light in the sun, had it since birth so I've had to use the NHS for years to get medication and different tests to manage my illness so I totally get what you're trying to explain about the NHS, my mum was my advacate as a child but now it's all me because I'm 33yrs. I really do hope you get your wishes granted and that you get chance to become a mother before anything bad happens to your bowels, I think your incredible for going through everything that you've had to go through and being able to stand proud and happy, because like me my illness has had its effects on me as a person, I was badly bullied through school so my self esteem and confidence has been negatively effected my all that. I admire how far you've come in your life when you've had such a bad time with illness trying to beat you down, you truly are an incredible and brave woman and I wish you both the best of luck with trying to grow as a family, so much love to you, from Athena ❤️❤️❤️
I feel like I manifested this video into my life today… got my implant out this morning as going to start TTC soon and have been rewatching your older hormone diaries videos this afternoon, go to look at my subscriptions and boom, this video was sat there waiting
Oof, seeing you just smiling through the pain is a real mood
TW: Blood - for those who struggle to do these prick blood tests - I really recommend doing some star jumps or a job on the spot as well as hydrating lots. I'm becoming an expert and it makes such a difference.
I have PCOS and my NHS fertility process was really quite quick, from getting the initial referral to the fertility clinic to getting the drugs was about 5-6 months, and then it took me 2 rounds of drugs to get pregnant. Hope whichever route you take gets you there quickly xx
The outfit you are wearing while you are doing the at home tests is so cute!!
So frustrating when you were refused the fertility referral, went to Gyne and was told you should have gone to the fertility clinic, and are now at the bottom of the waiting list!! Mental health is the same in the NHS. I wish our government properly funded 'non-essential' branches of medicine. (By that I mean, if you have a cancer referral they aim to see you within two weeks, but fertility and mental health don't seem to matter to the NHS when they're pushed for money and staff.)
Oh my god, I am sure glad I'm an American. If I want to see ANY Doctor I just call their office and make an appointment, no waiting lists, no referrals necessary. If it Is an emergency, I just go the an emergency room, no waiting, no hassle. Or just dial 911 and sit back, they will take care of everything immediately. 24x7.
A blood test appointment.... Ha ha ha too funny... But also sad that anyone would think that is normal. Here in America: if my Doctor need a blood test, he takes blood in his office than calls me with the test results.
@@robertslaughter7044 Yes but is it free?
Yeah I’d rather wait for free healthcare than pay. Glad to be British
@@megadramatic Same, I can't imagine having to go into extreme debt because of an illness or emergency. American healthcare may be quick but it is only for the privileged/rich and that is very sad.
Hey Hannah, as somebody, who works with numbers and sizes often and can make an image out of it pretty easily, maybe it's a tip for you to fill an empty balloon with some flour and form it to the 6.9cm of length, 2.9cm of depth and 3.3cm of depth in the other direction - a bit like a pear - like a uterus. ;)) And then you have a 3d object that symbolises the measurements of your uterus ;))
I have a genetic disease (Marfan Syndrome) and live in the US. I passed it on to my oldest son (he's now 23) but not my youngest. I realized when I was diagnosed when I was 30, that I had to be an advocate for my health and when my son was diagnosed, that I would have to be his advocate too. It can be exhausting but it is so important. I wish you all the best always!
Currently 22 weeks pregnant really feeling your health admin struggles! I have so many letters and pieces of paper with different appointments on them all over my house and I’ve never made so many phone calls in my life. Trying to get scans booked (then rebooked due to Covid isolation), get my flu vaccine and now starting to sort out mat leave is such a struggle. So much paperwork!!
Hi Hannah, fertility Acupuncturist here! So you do have PCOS. A few people explained below that you need two out of three things to be diagnosed. One is irregular/long cycles more than 35 days, two is cysts on your ovaries, and the third is high androgen levels visible clinically through symptoms or identified through bloodwork. Because of your cysts on ultrasound and long cycles you qualify for diagnosis. Also fairly indicative of PCOS is high AMH levels, and a high LH to FSH ratio. Basically what this means is that each cycle your ovaries create follicles that house the egg to ovulate. Because of the hormone inbalance of PCOS the follicles stall in their maturation and ovulation is not completed on time such as in a regular 28 day menstrual cycle. They are technically not really cysts, But an accumulation of immature follicles that were not able to complete the ovulation process. Because of your history of scar tissue, you should get an HSG, which is a procedure where dye is injected into the uterus and fallopian tubes and an x-ray is taken to make sure that the dye spills out of the tubes indicating that they are open. I would recommend looking into a medication called letrozole, which is used often people with PCOS to encourage earlier ovulation. A gynecologist or a reproductive endocrinologist at a fertility clinic can prescribe this for you. Your uterine measurements are very normal, and this will fluctuate throughout your menstrual cycle so it is not always static. Your uterus will be much larger when you are closer to you period. Your lining also sounds very normal for where you were in your menstrual cycle. I would also recommend looking into the supplements myo-inositol, NAC, magnesium, and vitamin d. Although of course first speak to your doctor before starting anything. I talk about hormones a lot on my instagram @sea_of_qi_healing. Hope this helps!
I know youtubers hate recommendation comments, but I and others would be so grateful if you could cover sex anxiety/ how ptsd can play a roll in both kink and sex avoidance. Love your content keep up the good work!
So nice to have this bit on how difficult to can be to get medical care. Currently I've been trying to find a doctor in network who treats my rare autoimmune condition and of course all my other doctors won't do anything until that's treated and my insurance won't even talk to me and tell me what to file! Protip: if you have a prescheduled appointment call anyway and you might be able to get a sooner or more convenient appointment time.
Hey Hannah, I’m sorry no one has made this clear to you but hope this helps. I am a practice nurse (GP nurse) and to be confirmed with pcos you need to have two of the following; polycystic ovary confirmed on an ultrasound, irregular periods and high androgen levels ( which will need to be confirmed on a blood test e.g high testosterone) if you have two of these things this mean you have confirmed PCOS.
Having pcos can mean you have infrequent ovulation which causes irregular periods which gives you less chances of trying to conceive each year, which is one of the main causes of infertility. Compared to people who are have regular periods and have predictable monthly ovulation.
Ovaries measuring more than 10ml is consistent with pcos
Hope this helps xx
Does the more than 10 mL ovary measurements need to apply to both ovaries for it to be consistent with PCOS? I have infrequent ovulation, with 6 to 8 cycles per year, and an ultrasound I had done in 2018 showed that one ovary measured 18 mL with a huge corpus luteum, while the other ovary was just 3 mL with no apparent abnormalities 🤔
@@mlynn998 interesting 🤔
@@ShirinRose it can apply simply to one ovary, but then there is also a chance that you ovulate from one ovary more. However seeing you don’t have monthly cycles, good chance u could have pcos, maybe try having blood test for ur hormones, ensure thyroid is also included for confirmation by doctor that you are officially given that diagnosis. X
So recognizable! I have a disability and we're are trying since January. I also have symptoms of endometriosis, so I got a referral for November. I feel a little less alone watching this. Luckily no friends who are having babies yet.
love the series, just an FYI one of the reasons that Dan's blood test was easier may be because he was more hydrated than you. There is a specific neurotransmitter that regulates your blood pressure and if you are well hydrated your blood vessels are not constricted, meaning the bloodflow will be stronger
I once experienced this during a blood test. I hadn't had any water in hours and the blood took ages to fill the vial.
You being so excited about your uterus measurements made my DAY. Also, 'but this is my series and I can do what I want' Haha!
I work in the andrology department (sperm stuff) at a fertility clinic in the US and it's so interesting to see the difficulty to access fertility treatments in other countries. We still have the recommended 12 month waiting period before pursuing treatment but it seems much easier to access this specialty in the US than the UK. Fertility is such an fascinating little niche in the medical world. I've learned so much and while it can be confusing (because we don't actually know *that* much) and heartbreaking, there is a great community for fertility patients and that's really rewarding.
“Here is my abstract drawing of my uterus. To scale”
So brilliant. Should put that in the Tate!
Hi Hannah, I really feel you on the medical admin. I have a rare genetic condition and its genuinely a task to keep on top of. Currently trying to get an ADHD assessment and navigating that minefield is not fun. I know in the UK we are lucky to have the NHS, but that doesn't mean we can't speak up or air our frustrations when we don't feel we are being heard or getting the right information. We are allowed to be both grateful and disappointed.
It’s always so wild to read notes about yourself from a doctor. Like finding out how they describe you/your condition from their perspective/understanding.
I apprecaite this series so much. Im in Canada and have experienced 3 miscarriages (my most recent one last week). I hate that i had a third miscarriage but there is a bright side- apparently 3 is the magic number to pursue testing to see what is happening. A dr appt next week to find out next steps. Ouf. Sending all the love your way 💜💜
I am so sorry you're going through this. I can't imagine how difficult it must be to wait until you can get evaluated, but it might help to know that there us an actual reason for that. Just in in case this is not information you'd like, I'm putting it in the next paragraph. It might be upsetting, as it will discuss this very sensitive topic in a very clinical way.
A lot of noticed pregnancies end in miscarriage, simply because there are so many things that need to go right for a pregnancy to go to term that statistically things are quite likely to go wrong every so often. Miscarriages where people noticed they were pregnant make up 8-25% of all pregnancies, depending on the study, but once you take into account all miscarriages before people notice they are pregnant that number skyrockets, as most of the things that absolutely need to go right happen in the first few weeks. Some papers cite it as being as high as 80% of all fertilizations.
Now, statistically, your chances of having a second miscarriage after one are the same as after none, at about 20%. After a second, those odds go up to 28%, which is marginally higher. However, after the third one, they go beyond 40%, which indicates that there is far more likely to be something going on beyond the simple errors that often happen. Importantly, that 40% is if the cause isn't found and dealt with, as several causes of repeat miscarriage are completely treatable. It does mean though that after the third one, it is worth looking into what may be causing them.
Definitely would advise you to pick one of your GPs (whichever you prefer) and keep seeing the same one. It’s fine to see whoever when it’s one off, but I’ve definitely found it’s better to request the same named doctor when it’s an on-going issue. At my GP, the doctors can actually book the repeat appointments themselves, which is awesome.
Hey Hannah, I have PCOS, I was diagnosed at age 14-15. I had terrible periods as a teen and I was referred after no period for 8 months. I was quite lucky and being so young and at the appointment alone, they explained I had the pearl effect (my overies look like a pearl necklace curled up in a ball.) Which is a big symptom of pcos. I have had several fertility investigations at hospitals. Mostly when I was younger. Although I recently had a gyne scan for a different reason and the sonographer Argued ( arguing agressivly) that I wouldn't have PCOS because they have to wait 8 years from the point of first discovering PCO before they will diagnose PCOS in the NHS. I have obviously had this from my teenage years, I'm 27 now and they wrote up a full report that was sent to my doctor basically saying I needed to be informed of having PCOS. My doctor was very shocked when I replied with yes I know, it's been 14 years!
However this would explain why your Getting conflicting advice from the various parts of the system. Hopefully you'll see this and you'll know. It's very likely you do have PCOS and all the symptoms you have match mine (other than my 8 month cycle in my teens). I hope this helps make your PCO/PCOS more clear.
Wishing both you and Dan all the very best in your fertility treatment, I hope it goes well. Me and my wife had the same strange and mad journey. Finally after some early miscarriage's and about five years it worked, and then again after another two and a half years. So two kids fantastic. So unlike the stage I called sex by numbers, keeping records trying to predict when and if ovulation would occur as she had very irregular periods, even longer gaps between them than yourself. Fortunately for her she does not have your bowel problems, I do instead, well Chron's but still a grotty bowel. Lots of love and best wishes Ray.
This video came in such a right time for me, so thank you! I've been having joint pain and fatigue for over a year trying to get a referal to a rheumatologist (nope). And the last two meeting with my doctor to get a referal to a pain clinic, having had one just today and being told it's really difficult to get one and she has do do (even) more tests. It totally feels like one step forward to steps backwards. I can't remember how many bloodtests I've taken, 5 different doctors, a physio, being asked is it my medication, my mental health? If you have more compex issues going to a gp isn's really the right place... Hope the best for you!
Hey dear! I know I’m a bit late to the game. I just wanted to encourage you to contact that OBGYN to do a follow up via phone call and ask all of those important questions. You have the right to know about your body and with working with a doctor they still can share an answer to your relative questions. Wishing you all the best on your journey!!!
Love you Hannah! You’re so amazing for being so vocal with your whole journey ❤️
Always ask all the questions. I work with doctors and some of them are useless at explaining in normal terms what’s going on with your body. It’s your appointment, try take as much use and info out of it.
If you go private, keep your NHS ticking over in the background. Some ccgs allow you to go back to NHS after a failed private and you will be grateful for that opportunity. I've had two rounds this year and the latest was the NHS round xx
I feel your frustration with the fertility clinic referral. Annoyingly the one piece of advise I heard is if you have ANY kind of fertility issue, you should demand from your GP that they refer you, even if you haven’t been trying for a year. And they should do that for you as you have an underlying condition that may cause you to not be able to get pregnant without medical intervention. Best wishes with it all though 💛
It’s very exciting to watch this video back knowing that you got pregnant during this time period! I’m very curious if you still had your appointments to find out what was going on or if those questions will remain unanswered for now .
"Something about my body is normal!" 😂 love that so much. When it comes to your body and health that really is the best. You want to be normal because that means everything is ok
Hi Hannah, I have so much sympathy for all the hoops you have to jump through. The NHS is amazing but the wait lists and referrals are crazy. I'm currently being investigated for endometriosis and it is taking so long. Its so frustrating, I just want to know what's going on 😪
Just started this vid, and I have to say.. Your posture is amazing
Rewatching this now you're pregnant (congrats!) and realising you were probably just pregnant at the end of the video
Excited for your fertility clinic appointment! Praying they have positive news for you both 🙏🏼 Sending lots of positive, fertile vibes 💫
At 15 min Hannah looked like she REALLY needed a hug 😯. Good luck with the journey.
The medical struggle is real! I've had such a hard time trying to get an autism assessment (which I will get the results of next week!) and to figure out my chronic pain. Always so frustrating, but just keep swimming!
Some medical vocabulary: A syndrome generally means that there is a few different things that you have that point towards one illness.
In this case, 'polycystic ovary' only describes the appearance of your ovaries (they have many (poly) cysts). The ultrasound can only make observations about your ovary, but the ultrasound itself doesn't know what your cycle looks like, that's why they just describe the appearance, by saying PCO.
"Polycistic ovary syndrome" indicates that you have multiple different things that indicate the illness polycistic ovary syndrome. This includes the cysts, but also irregular periods, indications of high testosterone (acne or hair on your face), and potentially some insuline resistance. You don't need to have all of them, but at least a few to be diagnosed with PCOS. Now the fun part is that some people have PCOS, but don't even have cysts on their ovaries. But because they have many of the other symptoms, it still means they have PCOS.
Think this is such a gift for you to be sharing this with us, thank you x
I'm diabetic - I can honestly say that with the finger pricks it depends on location, day, time, hydration. Sometimes I can barely get a drop out while othertimes I get blood absolutely everywhere
Just poppin' in to say thank you for the blood content warning :D Always appreciated. Sincerely, a wobbly bean
You're getting even more beautiful with no makeup over time.
Good for you and your handsome partner.
A good regular (singular) gp is soo important. I have had a few different ones and a good relationship with my current one had made so much difference to my health and conditions.
My GP wasn't concerned when I couldn't get pregnant but as soon as I called the doctor at the fertility clinic he immediately did blood work and looked at my tubes and uterus which is all free in Canada (yay). We did IUI and I got pregnant with my daughter 🙌🏻
Thanks for your raw honesty throughout this series and your content in general! I've become so much more comfortable in my sexuality since watching your content :)
I’m so glad to follow you! I am currently going through IUI! Male side infertility! It’s hard and emotionally draining! Looking forward to the happy outcome if we have successful round! Wish you luck ❤️