After 14 years of doctor visits I'm finally seeing a gynaecologist on Monday

[hellybaybee]

Hi everyone, I have horrendous period pain - vomiting, clotting, infertility the works! November before last I was given a scan and they found nothing and that my ovaries should be in good order. This surprised me in one respect as I often get a discharge of acrid water which soaks my underwear and saturates a tampon. Worst thing about this is that is doesn't only happen during periods but sometimes in between which makes me want to stay away from my partner to be honest because it's not exactly the nicest thing in the world. Conversely I wasn't too surprised as I think I have endometriosis which I know won't show up on a scan.

My mother had a hysterectomy at 40 and I have the same symptoms as she did. I am most concerned about this as her womb was fused to her bowel and the surgeon told her that it was a miracle that she had one child let alone 2. To put this into context, she had my brother at 21 and me at 28, I am 34 and have no children. After years of trying to get help, I kind of accept now that I probably never will. What kind of annoyed me though is that when I spoke to the gp he said "when you go to the gynaecologist, don't be surprised if they don't want to mess with you too much because you would like children and any sort of operation on your womb can damage your chances." I told him "well, I accept that I probably can't. I'm 34, I've been married, I've never been pregnant despite trying. I can live without children but I can't live with this."

Any way my question is what should I expect? I asked to go to somebody who specialises in endometriosis but he told me that it would be a general gynaecologist - he showed me the computer and that really was his only relevant option on the NHS- I wonder if I should have gone to mr Mann privately now (don't berate me, I'm not asking for comments on this, I have the insurance through work and it's my choice). I asked to go to Birmingham women's hospital as I know it is an endometriosis centre. Could anyone tell me what will happen? When I go on Monday?

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Simply had to reply!!! I'm 34 too, similar issues. Have one child who's 14 but never got pregnant again, got fairly bad endo. Go to the specialist that you've mentioned (I don't think we're allowed to name names on here but I might be mistaken). He is amazing!! He's done a lot of high profile cases and is heavily involved in endo awareness etc- he's often quoted in the press. He's also lovely and really listens to your preferences. I seen him privately and had my excision privately too. He managed to preserve my fertility and remove the endo...my gp had tried to fob me off with a general gyn but I knew I needed a skilled specialist surgeon. I'm in Nuneaton and scoured the midlands and found him...Its two weeks since my excision. The care was amazing. He is very thorough. I had a diagnostic lap in October with a general gyn...he hadn't got the skills to remove the endo so rather than risk another incomplete lap I sought out the consultant you mentioned. Best thing I did as the endo pain has dissipated...I also had a hydrosalpinx which he removed at the same time. Any problems he sorts there and then. Feel free to pm me with any questions- his secretary is lovely, it's deco worth having a consultation xxxx

[gwen80]

If you have health insurance through work, I think you may be able to see an endometriosis specialist or the consultant you would like through them. I have health insurance through work as well and called up the other week. They told me they cover endometriosis (I know I have it - was diagnosed in 2011). I had a list of specialists I was interested in and they were able to tell me which were on their list of covered consultants. I've now had a telephone appointment with my GP and a referral letter written. Sorry I'm rambling, but my point is if you have private health insurance, I don't think you have to rely just on who your GP is 'willing' to refer you to, i.e. what they can do within the NHS.

Gx

[gwen80]

I did also mean to address your question about what will happen. I'm not the most experienced endo person here, but I'd imagine they will take your history, symptoms etc, run through what treatment you may have tried in the past. They may suggest a transvaginal ultrasound. They should suggest some options for you to consider next. Hope that helps.

Gx

[hellybaybee in reply to gwen80]

Thanks, I was worried about this because so many don't cover "pre-existing conditions" which can be things that you've had since before the insurance (whether diagnosed or not). I will see what they say on Monday and go from there, I think the women's hospital in Birmingham is quite good. It does help, I sat at home before I wrote the original post and thought to myself "no one has actually told me what to expect". I don't really blame the dr, overall he was very good and he properly explained the scan to me. I think that sometimes they are so used to these things that they just forget that the patients aren't

[gwen80 in reply to hellybaybee]

Yes, the 'pre-existing conditions' clause plus my policy says it does not cover 'chronic' conditions so I did not expect to be covered either. However, my colleague suggested I call up anyway to ask - after all, I had nothing to lose. I was completely honest with the insurers and told them I was diagnosed with endometriosis in 2011 and suspected my new symptoms were due to it progressing again. To my surprise, they said I was covered to see a specialist for endometriosis using my health insurance! It's worth asking

I don't think you can name doctors on here (I did it first time I posted - oops), but do you know who you're seeing? Have you googled them? Does it look like they have an interest in endometriosis?

Just regarding the comment made by your GP...my understanding is that many women have gynaecological surgery prior to conceiving and, in fact, many have surgery to increase their chances of conceiving so I don't think the fact that you want children would rule out surgery.

Good luck!

Gx

[hellybaybee in reply to gwen80]

This is so helpful! Thanks! Haven't a clue who I am seeing. Basically, the dr had to pick a the type of specialist I need to see, then I had to go online and pick a date and time- I don't know if other areas do this now but It is the way they do it in Solihull now. It's not altogether bad as u can at least pick a day that works for you. I did make sure that I went to Birmingham women's though rather than Solihull because I know bwh is a bsge(is that the right acronym?) centre.

I thought that about the GPs comment to be honest. I know people have patches of endometriosis removed rather than have hysterectomies so that they can have children. Seemed silly to me - so you can have a condition that makes you infertile and they won't look at it because it can make you infertile? Weird logic.

Thanks for all your support 😊