Do I just have to accept that I can never have sex again and that I'll always have intermittent bleeding?

[BrussellSprout]

Okay I know my thread title is a bit dramatic but I'm fed up. I'm 32. Ever since my periods started when I was 12 they've been extremely painful, to the point I would have to have time off school for them. About 8 years ago I was diagnosed with pcos but I've never been given any help, the drs just keep telling me there's nothing they can do. Sex is extremely painful, to the point where I haven't been able to have full intercourse for about 3 years. The last few times I've tried the pain has been severe and I've started bleeding heavily straight away. Luckily my husband is really understanding but it's miserable

I've had the implant replaced and refitted a few times so I've now had it for about 6 years and it has really helped my periods, but a few times a year they will start again every 2 weeks for a couple of months

I've literally begged for help because I know this isn't normal. The GP referred me for sexual therapy counselling because they said it was a mental issue. I went along with that just to see if it did help and of course it didn't. I still bleed whenever I try to have sex

A mental issue???? How dare your GP suggest that. Id be putting in a complaint to the ICB. Thats basically saying I dont know whats wrong with you so you must be crazy 😡outrageous.

Get a 2nd opinion!

OMB I’m furious for you

Yes, they said it was vaginismus and that is was being caused by a mental block so I went along with the therapy to see. After scans they said it wasn't that it was pcos but they've never given any help since

Sorry, I meant to add that I also bleed heavily whenever I have smear tests done. I had to had them once a year for a couple of years due to abnormal cells and every time without fail I would bleed heavily

Have you seen anyone else other than GP? You need a gynaecologist consultant at your local hospital. Can you speak to the GP Surgery manager?

This is the thing, who do I ask for one from? I was referred to gynaecology and they are the ones that diagnosed pcos after investigations and scans but then I was discharged and told there's no help given for it

Just to check- you can still be intimate and be close without penetrative sex?

Sounds like endometriosis? Get an urgent referral to a specialist gynaecologist, go private if you can.

I have endo.

PIV was very painful. Yeah the docs pretty much washed their hands of it - took me years to get treatment at all.

no advice sorry but you are not alone

Somewhere like this;
https://www.londonwomensclinic.com/investigating-infertility/endometriosis/?infinity=ict2~net~gaw~cmp~LWC-GS-London-Localised~ag~LWC-GS-London-Localised-Dynamic~ar~546942149244~kw~~mt~&utm_source=google&utm_medium=cpc&utm_campaign=LWC-GS-London-Localised&utm_adgroup=LWC-GS-London-Localised-Dynamic&campaignid=14712994792&adgroupid=126933330189&network=g&device=m&keyword=%7Bkeywordid%7D&gad_source=1&gad_campaignid=14712994792&gbraid=0AAAAADrTaUA544u0A0JAh9Yt5QIu3DkGU&gclid=CjwKCAjw25fWBhAVEiwAMopNjpyRi1Z8N5SNYpeCugxpsrp3dTSXsMnJ97DQXewr7hs-eC6FF7Hv8hoC3zoQAvD_BwE

You have been thoroughly let down and fobbed off.

Insist to your GP that you want a second opinion from a gynaecologist so you need a referral letter. If they continue to be unhelpful change gp practice; that is much easier to do these days.

Has anyone ever mentioned endometriosis to you; it appears not but this is a common cause of painful periods. PCOS now renamed as PMOS does not cause pain.

In your case and if at all possible I’d go private given that waiting lists for gynaecology in many areas are miles long.

And you can get help for PMOS too.

Thank you everyone. I had considered whether it might be endo in the past, but I don’t have any hip/back or belly pain and I always thought that because other women seem to have it really badly then I probably didn’t have it as I don’t suffer from that side of it. When I looked into it that seemed to be mentioned as one of the most common issues. However I have always had bowel/constipation issues as well so now I am wondering whether maybe it actually is that

unfortunately I live in an area where all 3 of our independent doctors surgeries have just merged together under one provider so changing between them isn’t possible. I might see if I can convince a different one to take me on as there’s one in the next village but I’m about a mile out of their catchment area

I’m not sure I’d be able to afford going private but I will have a look as maybe it would be worth it in the end. I just really fail to believe that they can think this is normal at my age, it’s like they’ve just shrugged and said get on with it

You should at least be able to request to see a different doctor at your now-merged surgery, perhaps a female one or someone who has more of a gyno special interest. Your symptoms really are not being treated properly.

Hello @BrussellSprout . I'm so sorry you are going through this.

Just a thought - did the symptoms of painful sex start after you had the implant? I ask as synthetic hormone contraceptives can cause vaginal atrophy and dryness similar to what can happen in menopause.

And painful sex is also one possible indicator of endometriosis being present. It can also affect the bowels:intestines. I’d put money on it that endometriosis is the root cause.

Do see a gp within the practice who has an interest in gynaecology. Complain also to the practice manager if you continue to get nowhere.

let us know how you get on.

I’m sorry you’re going through this. I definitely would get another opinion, or a third if you have to. It’s ridiculous how women are just left to get on with it. I expect if your partner complained about it, something would be done.

Oh no. I've never thought of it like that but I've always taken hormonal contraceptives since I was about 16 as I initially took the pill to deal with my periods then swapped to the implant. I would say it's been more painful for the last 4 years

I would really hate to have it taken out as I hardly ever have periods now and would find it hard going back to having them if I didn't take anything

It might be worth a try @BrussellSprout ?

You need a diagnosis first and foremost OP.

Painful sex is a possible indicator of endometriosis being present.

Do keep your thread updated. You've been failed to date by both your GP practice and the gyanecology department (I presume an NHS gynae dept diagnosed you with PCOS now renamed as PMOS). I would also consider contacting PALS if you were a NHS patient for gynaecology.

PCOS shouldn’t make you bleed from sex. I mean, you may well have PCOS, but it doesn’t sound like the full story. Can you ask for a second gynae opinion?

Has anybody mentioned adenomyosis? There is a really lovely doctor on Instagram called Dr Nighat Arif that posts about female health. Have a look through her posts and see if any of the topics she mentions are what you are going through. I know she did some posts recently on adenomyosis.

Could you try your GUM clinic OP? They might be able to help faster and with more awareness of female pain than your GP?

My friend had PCOS and the implant and was told to just leave it in when it "wore out of date" and she was convinced it was causing her issues with her PCOS and hormones too. I would go there for an appointment about the implant and ask about the pain while there.