Hi, I'm new here but was diagnosed with endometriosis two years ago, when I was 22, after suffering for about 8 years. There's a tonne of stuff I just want to get off my chest because I feel like none of my friends/family/fiance truly understand some of the things, and I need to know that other people feel the same.
A quick background - I always suffered from the typical endo symptoms and was fobbed off with everything, including one doctor telling me "sex was supposed to be painful for some people and you just have to live with it" and a swab that was so painful I had to vom afterwards, so eventually I got covered by my dad's health insurance and went private. Within one month I'd had an ultrasound, laparoscopy where they found significant endometriosis (that had fused my ovaries and kidney tubes together) and lasered as much as they could out without damaging my kidneys. Then I was on prostap for 6months followed by three packs of microgynon back-to-back with one week off to keep it under control. This worked well for the last year and a bit, then symptoms all started coming back, the most significant being my weeks off of the pill were horrendously painful and I haven't had intercourse for 6months. Now I've graduated I'm no longer covered by my dad's insurance so had to go through the NHS (which I of course have nothing against, it's a great service).
Anyway, so my gynae appointment was today and went something like this-
Talked about symptoms etc etc and the doctor went to speak to his consultant, who said I needed an internal examination. I was completely freaking out, crying and blacking out but at the same time insisting we go through with it if it was absolutely necessary, because the previous simple swabs I had taken had been so utterly painful, and this person wanted to move stuff around and get right up in there and try and feel if there were any cysts or anything. Anyway, in the end they just couldn't get anywhere with it and I felt so useless because when I try to talk to people about this and how painful this sort of thing is, they say "oh but it's part of life everybody has to be examined/have a swab or smear at some point it's not pleasant but you just do it", well I've not been able to have anything inside me for the last 6months for pleasurable purposes, let alone gloving up and whapping a speculum in there and it just crushes me pyschologically it's so invasive. Have other people had the same experience with this being so painful? I feel like a complete failure and that nobody understands and I could tell all the nurses just thought I was a precious drama queen when the reality couldn't have been any different, I had told them to do as much of the examination as they could and I would just cry my way through it if I had to but the doctor refused in the end because it was getting so painful/distressing for everyone in the room.
ANYWAY that's a slight digression but also was really traumatic and I just wanted to get it out. The consultant said that I should go back on prostap for 6months (so had my first injection today) then onto the contraceptive injection instead of the pill and see if that controls it. I asked if that was a long-term solution as surely if the symptoms then come back again just going back to prostap can't be sustainable, especially with osteoperosis risks etc? Anyway, her response was that endo gets better with pregnancy so we'll see where we are when my fiance and I want to start trying for a family.
Now, I'm all for having kids and would adore a family but I have discussed with my fiance that the thought of being pregnant/having a child of my own (if that is even possible - what with endo related fertility issues being a possibility, plus the fact with my ovaries being fused to my kidney tubes my consultant said they wouldn't really know if my ovaries were capable of producing a good enough quality of egg until I were to decide to try for a baby) literally repulses me. I have been through SO much trauma regarding that area of my body and I have absolutely no interest in having anything else to do with it. I know people say it's being silly/I will get over it "when I am ready" blah blah but I am absolutely 100% settled and happy in myself that I really really do NOT want my own kids, I would be perfectly happy to adopt a child one day when I am ready, but I am never ever putting myself through a pregnancy and of that I am 100% certain, and was certain of this before I was even diagnosed/treated for endo in the first place. If they had turned around and said "it's all grown back, we'll do a hysterectomy", whilst it's a daunting and serious procedure, I would have been 100% fine with that in terms of its impact on my ability to have children of my own. But the consultant just smiled and said "oh you will change your mind, we'll see where we are". Sorry but I don't think that is an acceptable response? I don't see why they are putting me on a roundabout 'treatment' that sort of depends on whether I want kids at the end of it and assuming that is something that I will do simply because I have a vagina? Anyway, anybody with experience of being on prostap multiple times and knows whether it worked better/symptoms are less likely to come back after the second time, responses would be very much appreciated. I had my first injection on it today and I don't know if it's just because I'm exasperated/drained/have cried so much today, but I already feel less feminine and more disgusting and utterly fed up. I'm sure it won't have had an effect that quickly and it's just a psychological thing, but I really don't want to have to go through this same roundabout 3/4 times :/
Anyway, thanks in advance for any responses and apologies for the length of this post. xx