Looking for advice and hope

[Bluehusky96]

Hello,

I am wondering if anyone on here has been in a similar position to me. It was expected I had endometriosis. My symptoms are:chronic pelvic pain, pain during and after sex, pain that's so bad I can't perform my normal activities such as working (been off since February and walking more than a few minutes on a bad day, Nausea, constipation, heavy periods (hormones contracpetion have helped this) and Spasms.

I had a laproscopy on the NHS and they said they found nothing

I then went for a private consultation and the consultant was convinced that it was probably missed or that I could have deep infiltrating endo. His theory for this is because there was a real lack of detail of where they actually checked in the surgery notes and given my family history and symptoms he feels it lines up with endo. I've tried talking to the hospital to find our if the surgeon was a specialist but the ward secretary was not very helpful and simply stated "All gynes know what endo looks like".

I'm had a private mri which has showed nothing about from my uterus is tilted backwards. He's suggested I use my contraception back to back to prevent having a period.

I just wanted to know if anyone has had issues of having a lap and being told it's not endo, then later finding out it actually is?or if anyone has suggestions as to what else could be going on?

Currently waiting on a pain management appointment and another nhs gyne one. I feel hopeless and defeated 😪😪

Thank you for reading 💞

[Konagirl60]

I had painful menstruation my entire adult life which worsened after having a child at age 33. My GP said it was pelvic congestion syndrome. Then she said it was pre-menstrual syndrome. I used Ponstan when the menstrual cramps were severe. Thirty years later when I had my Fallopian tubes removed at age 63 the gynaecologist found endo on my right ureter. My womb it tilted to.

Could you have adenomyosis? Read about it and see if the symptoms fit what you’re feeling. Good luck.

[Bluehusky96 in reply to Konagirl60]

Thank you so much for responding. I'll have a look into this. So frustrating that they rule out one thing and that seems to be it. Even throughout that, I feel I've been advising/prompting doctors.Thank you for sharing your story too 💞

[Desperateforrelief]

I am so sorry you're going through this. Back in the 80's they weren't able to see adenomyosis, they had to examine the uterine wall with a microscope. Adenomyosis is similar to endometriosis, instead of the endometrial tissue growing throughout the pelvic floor, growing on the ovaries, fallopian tubes, etc., etc. The endometrial tissue grows throughout the uterine wall. Adenomyosis is considered to be one of the most painful conditions of the pelvic floor. It causes heavy periods, anemia, achy uterus, a heaviness in the pelvis, etc. I have read they can find it now without having to do a hysterectomy. Back then the only way to get a definitive diagnosis was by hysterectomy. My husband was told he needed to take me to a psychiatric facility because I was not in pain!!! Sad to say they still seem to think like this. If they can't immediately figure out what is going on, then it must be in our heads! Unacceptable. I call these docs "idiot doctors". I am entitled to my opinion, no? There are other things that can cause this kind of pain as well. Hang in there. Finding the right doctor is over half the battle.

[Bluehusky96 in reply to Desperateforrelief]

Oh my goodness the psychiatric comment must have sent you over the edge. Thank you for sharing your story, what you've been through sounds awful!I'll have a look into it, it's a shame they've not mentioned it as a possibility!

Seems they've ruled one thing out and there's nowhere else to go... when that's obviously not the case!

Thank you so much for your message 💞

[Desperateforrelief]

You're welcome. Unfortunately, we have to read the medical journals, figure out what is going on so we can direct some of these doctors. My husband says they are now A+B=C docs. If you don't fit into their formula, they don't have time for you.