Could I have Endo??

[Kayl101]

I’m going to try and keep this simple but load it with information, so I was diagnosed with PCOS at 17 after getting my first period at 15 and then nothing till I was about 18, I’ve lived with it for 12 years now and found that it’s been a right pain but manageable to some degree with the help of meds and diet not because I have PCOS but generally I like to eat healthily but I have always had heavy painful periods always around 9-16days they last but the past 2 years things have changed drastically I woke up in the middle of the night completey drenched in blood and unable to move wasn’t pregnant and really struggled with getting pregnant but the flow was so heavy I could barely stand up and that lasted for 3 months, in and out of hospital and they put me Norethisterone to control it but that just made it turn to water and worse, pain was like a UTI type pain but x100 and sharp pains down my thighs and groin area.

After those 3 months I didn’t see a period for 5 months and then spotting I have never in my life had spotting the spotting lasted for 2 months non stop and as it started getting heavier the pain came back I usually always have a dull ache in my abdomen but the sharpness was when I knew my period was imminent, everytime I go to open my bowel I bleed heavier for an hour or so after and then it goes back to spotting/light period, if I even attempted to walk more than 15 minutes I’d be completely overflowing with blood even started wearing incontinence pads...

I’ve been to see gynae for almost 6 years they’ve been telling me try this pill and try that and even put the coil in which made me bleed for 7 months non stop.

I became anaemic and now since October I have had spotting and heavy bleeding on and off, I hate opening my bowels as it hurts and the bleeding is much worse.

I have the classic signs but I don’t get why no one is taking notice

Pain during sex, bleeding after sex and painful urination after sex

Pain when opening bowels and I bleed (not from back passage!)

Heavy periods

Pain in lower abdomen, lower back, legs and groin.

Constant UTI’s which my gp said is a sign for some women.

I’m seeing my gynae next month she wanted me to lose weight but I can’t eveb pick up a kettle when I’m bleeding like this it pulls on my back and I can barely walk so how am I supposed to lose weight. I have never had problems with my weight since the new symptoms I have gained weight but she is reluctant to check for endo, said it’s not that common as people make out. It could just be my PCOS.

Sorry I said it was going to be simple but I ended up posting an essay!

[AllthatGlitters]

Hi Kay so sorry you are going through all of this & not being taken seriously by health professionals.

I agree with Linder that you definitely need to be seen by a gynaecologist as how can you lead a normal life with these symptoms!

I suffer with flooding and labour like pains as well as my blood not being at the levels it should be.

Luckily for me I was taken seriously from day 1 as I got admitted to hospital as I was in a bad way however the wait for my lap has been awful so I have decided to go private.

Is there any way you can get a consultation with a private hospital?

I believe you can get a private consultation and stay on the NHS list for any procedures. If you need any info regarding pricing please pm me.

I think you would be given more time to explain your symptoms & it’s really bad that money talks!

At my NHS appointment I was speaking to the consultant maybe 5 minutes and it all feels very rushed. It’s only when you go away that you have questions but then it’s too late.

X

[Kayl101 in reply to AllthatGlitters]

Thank you for your reply.

I’m sorry you go through the same things but luckily you had good health professionals looking after you.

I can’t even begin to explain the feeling of why does no one listen, like my last gynaes have all been males and he was stumped as to what it was because even after being on the pill for a year to induce a period I never had one and then I start going back a few years later and now I can’t stop my period at all.

I think I would consider going private I have been meaning to look into it, I had a 25 minute consultation with my NHS gynae and she had me tears when she did my swabs I told her beforehand intercourse is painful so using a speculum will be equally as painful she was like it’ll be over really quickly, as she put it in that wasn’t so bad but when it went a little further the pain that ran down my legs and spine and sharp pain in my abdomen I just cried.

I got a letter after saying I suffer from deep dysparunea (or something like that!) and she would like to see me in 3 months but she’s hesitant it could be anything and in the letter kept referring just to my PCOS.

I have now been bleeding since October 15th so just over 2 months and it’s not stopping anytime soon by the looks of it.