PCOS

[Codiaeum]

I might have already posted this on here but not sure, if you have less than 4 periods a year then your gp needs to give you medication to induce a period as it’s really unhealthy to have less than that! Mine gives me medication if it goes over 3 months between them as that’s when it’s considered ‘too long’ if you like, I only know from experience xx

The doctor I was speaking to last week told me that it's not medically necessary to have a period if you're on contraception. But he did say what isn't good and what can happen is that you have a period but it (sorry, gross) doesn't come out. He also mentioned that it can happen that you ovulate but don't have a period as the hormone levels aren't high enough to trigger one. That one is probably important if you're trying to conceive.

 

[Savewaterdrinkgin]

Nice to see a thread on this as I haven’t got any one to speak to about it in real life! I was diagnosed 17 years ago and luckily managed to have my kids without any difficulty, but now I’m older I rarely have a period and have every symptom going. I was on the mini pill for a year to try and stabilise my hormones which worked but I came off it last month to try for a baby and nothing. Sore boobs and cramps, no bleed or period, negative pregnancy test and now massively paranoid I’m entering early menopause! Has anyone tried any medication that’s helped at all? My doctor is shit so I know they won’t be much use and to be honest I’m scared to hear potential bad news

 

[slugella]

Take a blood test to understand if there are any other underlying issues. Alternatively use Biotin, this has stopped my hair falling out. This can ve available from Holland and Barrett or Amazon.

Thank you, I'll have a look into it! I had a full blood check up recently and pretty certain it's to do with PCOS.

Has anyone come across any helpful websites, YouTube channels or books on PCOS? I have read a lot through Google searches but interested in any particularly helpful resources to learn more.

 

[rasberry spoons]

Hello ladies, I’m new to this thread and wanting to rant/hoping to get some advice. I’m growing increasingly concerned about my health as I’ve not had a period in over 6 months, I’m not on contraception. I finally got a phone consultation with my gp as my weight has plummeted since having my baby in 22, I’ve always had irregular periods but haven’t had one for 6 months now. The gp has told me I possibly have PCOS but I can’t understand why he has said this as the periods are the only thing connecting the two? Has anyone had similar?

 

[whyhellothere83]

Has anyone managed to get regular periods? I had 4 last year and haven’t had one for 4 months now. I’m unsure what I’m supposed to be doing, if anything. I was diagnosed last year and then left with no further advice.

 

[sleepflowers]

I spoke with my endocrinologist today and it turns out my thyroid is slightly under active. Also, I have elevated dhea (sp?), which may be causing my PCOS

I have elevated Dhea too, I've never really succeeded in finding out much about it though. Sounds like we have adrenal PCOS which is less common than the other type

 

[abeautifullife]

I can't stand how all the PCOS accounts seem to forget about tuberous breasts as a symptom (which I have) WTF.
For what what it's worth, reiki for pcos would be something to look into. There's some for free on Youtube x

 

[soymilk]

Sorry to hear of your diagnosis. It’s nice to be ‘labelled’ but it does make things much easier to understand. What pill have you been put on?

it's called adepal but may also be known as minidril - after reading about it online for a bit it says that it is useful in cases of weight gain, abdominal pain and spotting etc which is good to know I suppose!

 

[Luce0331]

Have you tried the other pill? (Can’t remember it’s name now!)

I’ve tried the mini pill too if that’s what you’re referring to, bled constantly on that too!

 

[glitter tits]

Yes I was going to ask this and you are right - there’s a 2 out of 3 criteria for PCOS that generally you would have to meet. Normally you would have blood tests too because blood tests can help with seeing if there is a hormonal imbalance which is what PCOS is. I have PCOS and I am the insulin resistant type (i think theres 3? types) but I don’t have many cysts I believe - I see a Endocrine every 6 months at the moment to help me with the symptoms of pcos. If you haven’t had any blood tests then I would push for them to do some and also get them to check your thyroid too as *i think* your thyroid can impact your periods and weight gain/loss depending on whether it’s under active or over active so worth looking at that too Hope you get the answers you need @glitter tits - try not to be too anxious, periods can stop/become irregular for tiny tiny things. Even if it is PCOS, there is support available in different forms xxx

Thanks you both for replying

yep I had blood tests a couple of months ago and they didn’t show anything (I think they were looking for both PCOS and thyroid issues), but my GP thought that the scan would most likely confirm PCOS as she couldn’t think why else they would have stopped for so long (I came off my pill a year ago so they know that’s why they’ve stopped so suddenly but GP says that I should definitely have had regulated periods over the last 6 months). I guess I’ll have to wait until I see the gynae for any potential answers but I just know that’s going to be a while due to backlogs

 

[bbbbbbb123]

For anyone who's had metformin, how did you manage to get it? I was diagnosed with pcos about 4 years ago, but my Dr's were useless and just said there was nothing they could really do for me. But I've seen loads of people say they've been given metformin, is it just something I ask my Dr for? I'm with a new one now so maybe they would be more helpful. And if you've seen an endocrinologist, has it been on the nhs or have you had to pay privately? There's a private one near me but he charges about £190 per time which I can't afford

I literally just asked my gp if I could go on it and she said yes. I’m trying for a baby and need to lose a bit of weight to qualify for help so not sure if this made a difference

 

[Grigiogirls]

hey! I have PCOS and was diagnosed when I was around 17 after being in hospital with a burst ovarian cyst, I'm 25 now. My current form of contraception is the implant in my arm, however I am considering having it removed as I have bled constantly since having it in before Christmas and my skin, mood swings and anxiety have never been worse. I'm just cautious whether this is due to having PCOS or the implant. I'm wondering if any of you have suffered with PCOS which has caused issued with contraception - more specifically the implant?

 

[Looboo]

Your weight shouldn’t really play a part in how clear a scan picture is too be honest. I’ve had an internal vaginal scan (think they call it a transvaginal scan or pelvic scan) a normal over the skin ultrasound if that makes sense - maybe an internal vagina scan would be better as you can see the ovaries and cysts with that. Unfortunately, doctors will fob you off with the pill as some magic solution to PCOS. I think doctors are reluctant to give a PCOS diagnosis if there is no cysts for some reason, I’ve heard of this happening.

What did they check for in your blood tests? Did they check the thyroid levels too? It could well be Hirsutism or Thyroid rather than pcos as a lot of the symptoms you’re having come under that too such as the excess hair, thinning, irregular periods.

I would certainly keep pushing it though, especially if it’s having an impact on your life. Maybe seeing an endocrine could be good as they deal with PCOS? I see a consultant every 6 months for mine.

I had both an internal and external scan - and guessing that’s what I’ll have next time. Fingers crossed it’s clearer!

I had quite a few blood tests including thyroid! I didn’t actually know that those symptoms can be caused by thyroid too though.

I will keep pushing for sure - how do you get to see an endocrine? Just ask? Thanks for your reply x

 

[slugella]

Hello ladies, I’m new to this thread and wanting to rant/hoping to get some advice. I’m growing increasingly concerned about my health as I’ve not had a period in over 6 months, I’m not on contraception. I finally got a phone consultation with my gp as my weight has plummeted since having my baby in 22, I’ve always had irregular periods but haven’t had one for 6 months now. The gp has told me I possibly have PCOS but I can’t understand why he has said this as the periods are the only thing connecting the two? Has anyone had similar?

Hi! I went to my GP a couple of years ago as I hadn't had a period in 6 months. I didn't even know what PCOS was at the time but the first thing my doctor said was that it could be that as irregular periods is one of the signs, so he would do some tests. I had blood tests and a scan. You need to have 2 out of the 3 "criteria" to be diagnosed with PCOS - irregular periods, cysts on ovaries, and/or excess hormones like testosterone in blood test.

Have they referred you for any other tests?

 

[knivesnflowers]

What a relief to find this thread, so many posts here I could have written myself. The thing I find difficult is that so many of the symptoms (for me) are appearance things that women have been taught are shameful, so it’s hard to talk about them with friends who aren’t having their hormones plotting against them. Also blowing my mind to see for the first time a link between PCOS and tubular boobs mentioned!!

I’ve not sought any help for it for a long time but I’m also not interested in having children so I doubt I’d be taken seriously by a GP. It is baffling to me that the focus for treatment is on whether I can bring hypothetical new humans into the world and not the effect that living with this has on me, a human who already exists.

I’ve been following a lot of PCOS accounts on Tiktok and finally ordered some supplements because the excess weight and hair, and a sudden thinning of my head hair this year is driving me towards finally taking control. I am trying to get myself in the mindset of the change to what I eat being an allergy/intolerance and treating it as seriously as that, because ultimately what the hormone levels mean is that my body doesn’t tolerate carbs well without disproportionate weight gain.

started lurking here recently but waaaait really?! love finding something to blame my body hang ups on...

also agree about the reluctance to treat if you're not trying for kids - i'm 21 and was offered metformin, asked the doc to advise based on my other health conditions (mainly me/cfs which got worse when they tried to change one of my chronic pain meds) and he decided against it bc it would be more beneficial in the future if i were to have fertility issues

i was meant to have a follow up appt with that dr in august but heard nothing so need to chase that in the new year actually, considering asking his opinion on WL injections bc i'm sooo sick of the assumptions they all make. i've got multiple conditions and take multiple meds, all with weight gain side effects, yet get a BMI lecture when i'm there for something as simple as a blood test

re. PCOS specifically, symptoms were periods twice a month and long bleeds (up to four months), acne, hirsutism, bad pain etc which was confirmed by a blood test with high testosterone / androgens. combined pill didn't work (estrogen and cycle triggered migraines), provera for a few years which stopped bleeds until it didn't, and now double dose of progesterone only pill which has mostly brought it under control. still get breakthrough bleeds but when i was still having proper periods mefenamic and tranexamic acid did help with pain and clotting.

and for context all my diagnoses stemmed from hashimoto's thyroiditis / autoimmune underactive thyroid!

 

[SNLGJ]

I have PCOS. I’m slim, not particularly hairy, skins not too bad etc however I do not ovulate due to hormone levels and have the typical ring of pearl ovaries. Even clomid didn’t help me, my daughters were born via IVF, I responded very well to the ivf, over stimulated which is common with PCOS. But over than the fertility issues PCOS hasn’t been an issue for me.

 

[London_Girl]

Hello, just wondering if anyone has experienced what I'm going through right now.

Diagnosed at 20 with PCOS, confirmed with ultrascan and amenorrhoea since 14. Prescribed the pill at 20 and have taken that for 10+ years. I decided now it was time to stop taking my pill with the doctors support.

Anyway, has anyone been in a similar situation where they had absent periods for years and found a way to get their period without taking the pill??

I am enjoying a high protein diet recently and hoping this might help me ovulate but if anyone has any advise on what worked for them. Please let me know as I just want my period even if its irregular.

 

[Megera]

Hello! So glad to find this!

I got diagnosed earlier this year with PCOS after not having a period for over a year. I've recently been prescribed Provera (Medroxyprogesterone) to basically give me a period. Has anyone else had experience with this?

I had my first bleed a couple of weeks ago, which lasted for about 6 days and stopped. Two weeks on I'm bleeding again??? All a bit confusing

 

[Codiaeum]

Hey all,

I don't know if I have PCOS, but I've suspected that something isn't quite right for years and have finally found the courage to see a gynecologist specializing in female hormonal problems. I go to my regular gynecologist checkups once a year (sometimes half a year, when I can be bothered), but my concerns were never really considered

The reasons that I think something is off is that I've always been rather hairy everywhere, even though nobody else in my family is. I even have a line of hair growing down my stomach above my navel and then really thick dark hair from below the navel. Plus some chin hairs that I got electrolysis for, but new ones keep growing of course.
I sometimes can express "milk" from my breasts despite never having been pregnant. And I've been on hormonal contraception since I was fourteen - I'm 33 now and use a hormonal IUD. My periods and cycle are a mess, completely irregular and often nothing comes (still get PMS and cramps, thanks!) but then I'll have one where I feel really sick and it's extremely strong. However because I've been on contraceptives for so long, my concerns were kind of dismissed, as the doctors kept telling me that with the IUD it was normal that I didn't have a regular period and all that.
I got my period very early, at eleven and they were extremely heavy. Of course, I don't know what they are like these days without hormones, but I still think it would be good for someone to check things out a bit more thoroughly. I used to have cysts, but again these were dismissed as often coming from the IUD (but I used to have them even when I was on the pill).
The only thing that isn't typical for PCOS is my weight (I'm slim and don't normally have unexpected weight gains), however, I feel and look constantly bloated around my abdomen and I don't know if that's related.

Any advice on what to expect during the appointment? I considered calling such a doctor for years but always held myself off - also it's a practice for fertility treatments and I hope they don't think I'm wasting their time as I'm not coming in for that.

 

[Apple In My Pie]

I’m wondering if I have PCOS, does this sound like it…?:

irregular periods, as a young teen they lasted two weeks at a time and I had to wear giant incontinence pads, it was like this until I was 17 then fell to ten days, they’re still irregular now but in a weird way - e.g. I now know after religiously tracking my cycle for a year that my period comes every 40 days or so and tends to last ten days - except I always w/o fail miss one or two and then have a really heavy two week long period, or very light spotting, or I will finish for two weeks and then have light spotting again. So I can never say ‘oh yes I’ll go swimming, because I don’t know if I will bleed or have a ‘normal’ period.

Hairy, everywhere hair could be I have it toes, belly (happy trail), boobs, upper lip and chin - dark and wiry- looks like pubes, so embarrassing.

Weight gain, I have always been big anyway but every time I lose weight I seem to stall at a certain weight and find it really hard to lose any more, this is despite me eating a good diet, even when I was calorie counting I stopped once I hit 10st and still have a big belly.

GP doesn’t seem to care and doesn’t want to put me on the pill due to other health issues. I was put on menamphic acid for six months (no idea if ive spelled that right) it helped after three months or so but made my periods really odd. It’s as if, every time I miss a period, my body is on catch up mode and I then get a really heavy period and spotting in between.

A lot of the women in my family have it, my nan, sister, cousins…