I had my first lap in november 29th and since then have been in much more pain than i was before. It took me yrs to finally get docs to do something. It was found i had severe endo, both ovaries pulled in and stuck to my bowel, endo between my womb and bowel and endo as far down as my cervix. I was told once awake that most was removed and my ovaries were saved and put back into place.
I had an MRI scan after my lap which showed i still had endo around and that my right ovary has lots of little deposits of endo which is deep rooted and cant be removed surgically. I was then put on decapeptyl which some of u may have red an earlier question about it due to me suffering severe side effects. I was then moved onto provera and after 4wks and being in constant pain my gynae said i need to try danazol as its really good and not many suffer side effects. Ive bn on danazol nearly 2wks and had horrible side effects again and ive had enough.
After having time to think about things i have realised that they have never really explained the outcome of my MRI scan and keeps telling me i need to be on some sort of treatment.
before i suffered terrible painful and heavy periods for a about 2wks a month, but now i have constant lower back pain and worse on my right side, the pain has been going right into my pelvis and down my thigh like the pain u get when u have ur periods but this is more intense. I would rather have another lap instead of all this shitty hormone treatment but i think people think im nuts. Ive been told i may lose my ovary but im now at the stage where id rather lose it if it ment less pain.
Sorry for the story there but i just dont know what to do at all. I feel ive tried as ive bn on some sort of treatment since jan and have not had any good changes from it.
It seems we go all these years having these pains and symptoms, at times being made to feel we are imagining it, and then finally we get our lap and diagnosis, and it's a real mixture of emotions, because yes we now have a reason as to why we have been in so much pain, and no we're not going insane or imagining it but then it seems, from what I'm reading on here, that even with a firm diagnosis that the majority of us are still wondering what's next.
I think you know I had my lap nearly two weeks ago, I got diagnosed with severe endo, and in all the places we don't want it, it was the one piece of news I dreaded, I really didn't want it yes I wanted a reason but endo was one of the few things I did not want diagnosed. So far I only have been told severe endo, where it is, too much to treat at time of lap and have been told to have hysterectomy inc ovaries, I have no problem with having that op, not really, I'm 41 and have grown up/teenage children, but I need to know that they are going to try to remove the endo at the same time and I get the feeling that they won't. They did mention six months of fake menopause but I don't really see the point of this, if it can only be given for six months it's just delaying the inevitable surely? And I'm just not keen on having hormonal treatment, as even with the mirena I suffered side effects.
and I know I'm much more early days regarding my lap, 12 days post op, but like you I'm in far more pain than I was before, initially I had the actual lap pain with the sterilisation and ablation pain, but since around day 6 I've had the most chronic lower back ache ever, the worst it's ever been, and more intense on my lower left side front (the usual problem place) I've just put this down to the possibility that maybe they disturbed things in there and the fact that no endo was even treated so it makes sense I won't feel any better then pre-op but I certainly didn't expect to feel worse.
I'm lucky that my next consultant app has come through already, it's on the 9th, it's the consultant who stated to my gp that 'it is possible she may have endo but on balance it is very unlikely she hasn't' so I'm not looking forward to it, and like you say no doctor ever seems to fully explain things to us. So many people now think I'm better now I've had 'my op' they don't get that nothing's actually been treated and that I'm pretty much in the same position as I was, worse now pain wise, the ones that know I've been told to have a hyster are saying oh yes good job get it done, why wouldn't you, they don't get that unless the endo gets removed it probably won't help, and I don't think I'm going to put myself a big op like that unless they are going to try to remove as much endo as they can.
Sorry it ended up a long one, and that I've not really offered any helpful advice, but more of I've just ranted on - what's your next move? Are you booked to see anyone? Xxx
Just to say that the reason they say do the hormone treatment for 6 months is so that they can tell if the total hysterectomy will help - basically the hormone treatment chemically shuts off your ovaries, but can't be given long term so, if you try it and that gets rid if your pain then they will surgically remove your ovaries.
I'm in the same position as you, some endo removed but not all, still in lots of pain, told to do the hormone thing and total hysterectomy but don't want the side effects.
I've said 'no', requested my notes so that I can be clear about what the situation is now and am going to hope for early natural menopause and try to manage my symptoms until then.
Having said that, things got a lot worse this week so I may change my mind.
Two weeks is very early after your lap though, there's no way you have healed yet so fingers crossed that things get a lot better over the next month or two. You could also try a Mirena, I had a rough few months with it, but now although I still have endo period pain, I don't have periods and it is a bit easier to cope.
I had the mirena removed at time of lap, I kept it in for 18 months but it didn't help the pain, and yes I suppose that makes sense about trying the hormone thing but I get scared trying these hormones, I'm so obsessed ill lose more hair, I know it's silly but it really gets me down that the mirena thinned my hair xx
Hey really get all the information about the hormone treatment and only agree if u are really sure. Ive had an shit time since jan and if i knew how it could effect me i would have said no. I am not the same person just now and i want to feel normal again. I constantly feel unwell, emotional and generally out of sort. I suffered alopecia 4yrs ago and got my hair bak after 2yrs and its been fallin in and out since, i believe that all this hormone treatment is making my hair come out more as its thinning all the time and im losing alot when i wash it. This may not happen to u and it could be a miracle drug for u, but just think about it seriously before u do. wasnt trying to scare u im just being honest. xx
you haven't scared me, its good to hear others experiences, and although i will hear what they have to say on it, my mind is pretty much made up that i wont go for hormone treatment, i seem to suffer side effects of most drugs, even the pain killers, and like i said the mirena, if they can say they will try to get rid of the endo at the time of the hyster then I'm going for it, apparently the risks of no hrt/no ovaries is low once you reach 45, I'm not far away from that anyway xx
Yes i want the endo removed too and if it means losing an organ then i will have to do it. thanks again xx
I had the mirena coil fitted 2 months ago and I have lost at least a third of my hair. Is there any evidence that it settles over time? If not I need an alternative remedy to heavy periods
Hey sorry to hear ur in the same position. Yes im also wanting to see my notes as im not clear of whats going on in my body either n just by what they tell me. Ive hated the hormone treatments and feel its just prolonging anyones suffering as after months u'll be bak in the same situation. Hope things work out for u xx