The waiting game is killing me

[Tash-W]

I was diagnosed with Endometriosis early December this was after a wrong diagnosis 4 years prior where they said I had cysts which can be left which due to being untreated now is stage 3/4 endometriosis all over my ovaries and bowel and rectum. After being told it was endometriosis and where and the stage I was then informed that due to the quantity of it my hospital can’t deal with it and they have referred me to a specialist in oxford for endometriosis but the waiting list is 6 months . I have finally got my appointment in May however all this waiting and unknown answers is killing me and making it difficult to process. So I appreciate that everyone has different treatment but wanted to ask once diagnosed the time frames and process’s people have had. I was informed I would be needing surgery but the specialist would tell me more.

How long have people had to wait for surgery ?

My husband and I want to try for a baby but I have been informed that we can’t till after treatment is complete.

Has anyone else been told how long they have to wait before trying to conceive after surgery?

Is there complications trying to a baby before treatment ? (I just worry they have so much to sort inside that they might damage my chance of ever getting pregnant)

Apologies for the ramble. Just feel like I was told the basics then chucked away to wait and left me with all these questions and worries.

[Afrohair]

Hi Tash I’m in a similar situation to you I am also trying for a baby and I’m awaiting a diagnostic lap and treatment as well! it’s a hard time waiting I’ve already waited a year just to get some answers and ended up going private just for a consultation to check that even had endometriosis which I was sure I had anyway I am now waiting for a referral through my GP to a specialist and I’m hoping that all goes through perfectly from what I know it could take three months just to get the referral accepted and then after that I will have to Wait for an appointment time and then after that hopefully with in six months due to NHS guidelines I should get another appointment time for my laparoscopy it is awaiting game and it’s very difficult I’m finding it difficult because I’ve already waited a year for answers and then looking at up to another year to get my lap and I am approaching 35 now I will say that I have tried for a baby before and I ended up having a miscarriage at 12.5 weeks and I’ve heard it’s from you having a hostile environment for the baby to growI’ve been told I can go ahead and keep trying but I’m worried about this because of the growth could get worse so I am thinking about the marina but I really don’t know at the minute I’m just doing everything naturally and approaching a natural diet trying to calm my womb as much as possible when it comes to periods hope this helps feel free to pm me x

[Mabel208]

I feel I have been incredibly lucky with my diagnosis as I had a large endometriomas (Also was hospitalised twice) so had surgery within 4 months of them being spotted on a private scan (just while waiting for NHS appointment as felt like I was going crazy!). I was told by a general gynaecologist to keep trying to get pregnant while waiting for surgery/referral, but then told not to by a fertility specialist, as they wouldn’t have done the surgery if I was pregnant. Post surgery I’m having GnRH injections for 3 months and then can start trying/IVF.

I would say though, I felt uncomfortable trying in the interim just because of the sheer amount of codeine and other painkillers I was taking just to get by and how that might affect a pregnancy so we just didn’t.

I completely get the not knowing and it is awful, but they also don’t know anything for definite until you have surgery. My Fallopian tubes were meant to be in such a state/inflamed that they needed removing, but after physically seeing them during surgery, they are absolutely fine and still both here!!! So there also can be positives to waiting and knowing, I absolutely worked myself up into such a state but I feel a hundred times better now and I know it’s so easy to just say be patient when you feel like that, but you will get there.

It is massively a postcode lottery as well and really depends on the area you’re in unfortunately. Keep pestering for cancellations as well. Fingers crossed for you x