PCOS and possible Endometriosis, please read

[winkingdemon]

Hi all,

Sorry this is long but I’m looking for a bit of a handhold and other peoples’ experiences.
I am 23 and was diagnosed with PCOS in March (after I discovered in my own notes whilst in hospital that PCOS had been spotted on a scan in 2015 but never followed up, but that’s a whole other thread). For the 10 years since my period started they have been horrendous and very irregular. Most of my college/uni life was spent in bed, missing important classes and lectures and deadlines etc because I couldn’t leave the house due to the pain and the bleeding (I’m talking a super plus tampon and night time pad getting changed every hour and still pouring through my clothes) I used to have to take spare clothes and supplies with me anywhere I went just in case I started bleeding.

So I was diagnosed with PCOS in March, however various medications over the years have had no effect so I have persisted to find out what’s happening with my body. Saw the gynaecologist today after a 4 and a half month wait since referral. She was the best healthcare professional I’ve ever seen and was extremely thorough, explained everything to me and did a very thorough internal examination (which was excruciating!) and said she felt a lot of thickening inside etc especially on the left side (which I have always said has been far more painful before/during periods and has been ignored whenever I’ve mentioned it before). Basically it’s been years and years of pain, bleeding, A&E trips, hospital trips and GP appointments to no avail.

Well today was the start of something, I hope.

I’ve been discharged back to my GP with extensive notes and told I need to make an appointment with the GP tobe referred for a scan (as they should be done annually, my last one was in 2016 but I was only diagnosed this year so understandable), blood tests etc, put on Metformin and lastly, a laparoscopy to see if there is endometriosis.

I’m worried that despite all this the GP is going to try and fob me off like they have done forever and I won’t get the help I need, but also anxious that if they refer me, I have all of this to come! And then of course there’s the worries about fertility, which are massive.

Has anybody ever been through this before?! Any success stories, any way I can make sure I get referred and everything is done? Thanks for reading

Hey OP that sounds awful.

Depending on what the gynaecologist told you she suspects it is, I think the scan would be for fibroids, cysts, tumours (scans won’t show endo) blood tests can be done pretty simply by a nurse and the dr can prescribe your medication easily.

I am surprised that the gyno didn’t refer you for a laparoscopy herself. I saw mine (for the exact same issues as you describe) last month and she has referred me for the operation at some point before Christmas, which is thankfully a fast turnover.

Don’t be anxious. I think the first thing you need to do tomorrow is book your drs appointment and blood tests - it should say on your notes you need them doing.

When you see the dr ask for clarification on what gyno said and work out who’s meant to refer you for surgery. The dr can refer you for scans.

It’s all very straightforward. See it all as a positive to getting closer to finding out what is actually causing your pain and being able to understand and manage it.

Good luck

@1wokeuplikethis

Yes, she suspects endo so that’s what the laparoscopy is for, as it was only a gynaecologist clinic thing (they travel round and did it at my GP surgery as opposed to going to hospital etc) it’s now back to my GP to do the referrals based on her findings etc so now it’s the fun game of trying to get an appointment with them to do it

The scan like you say is for cysts etc and to check up on my PCOS as I don’t have a recent scan to go off

It’s good you got an appointment so quickly, thank you for replying and best of luck with everything

I have hemorrhagic cysts and enlarged ovaries. This was diagnosed after a transvaginal ultrasound. They also think I have endometriosis and I was reffered to a gynacologist.

I saw her yesterday and she was amazing! She thinks I have 'scattered endometriosis' around my bowel and bladder as I have a lot of problems with diarrhea as well as severe pain during my period (at some points it's dificult to walk as the pain goes down my pelvis and leg). She has recommended keyhole surgery to clear the scarring which should give us 40% increase in being able to conceive and will help with the pain. Then she recommends going back on the pill (if I manage to get pregnant this will be after). Just waiting for her letter so I can book the operation. No idea how long the wait will be. I have BUPA through work but there is a limit to cover.

I was on the pill for years because of painful periods and she said this probably helped the scarring which is now present since coming off the pill a few years ago.

It's a horrible pain to put up with. My periods are very heavy. I have to use night time pads all the time and usually go through 3 packs of 12 when I have my period.

Good luck! Your symptoms sounds more severe than mine and I really don't think they will fob you off. Everyone I have seen has taken it very seriously. I hope I'm not just lucky.