Hi allI had an MRI in December which was basically a bit of a shambles (not reported correctly) they THINK I possibly have DIE of the rectosigmoid. I got referred to a specialist centre which the appointment just keeps moving further and further away.
I have an appointment on Sunday with my local hospital after a whole range of disastrous MIGHTS, MAYBES AND UNCERTAINTY from what seems general gynea etc being UNSURE of what I have or what I need.
Anyways. As I know I 100% just want a full hysterectomy by ANYONE I'd have the postman do it if I could. As I'm unable to function I feel my life is being taken from me with this pain not to be dramatic but I genuinely don't feel I can cope. Do I request My local hospital to atleast attempt to do this and if they find DIE which is problematic (cervix attached to bowel etc) abandon and give these FACTS to the specialist centre or do I continue being drugged up to the eye balls unable to function everytime I ovulate and have my period and many days in-between? Any one been in a similar situation? I'm just feeling we are working with too many. Might and maybes to leave me waiting however many years for specialist treatment when we arent even sure what's what.
Thanks all xxxx
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Lornalost89
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I have complex cysts on each ovary I've had issues with these for 20 years and numerous surgery's to remove them but the root cause never identified. Each time I've been to my GP with pain I've had cysts, only 12 months ago did they start considering endo. My main pain is with ovulation and periods which is consistent with the cysts. While I know a hysterectomy won't fix endo I do believe it may fix some of my most problematic times of the month xx
I feel your pain. I'm in an opposite situation though. I had a laparoscopy last month, no endo found but severe adhesions, which may explain my pain but not my heavy bleeding which is currently being ignored. So now I'm asking for an MRI to look for Adenomyosis or anything else, but I'm being refused. I'm 38, and would absolutely love for someone to agree to just remove the whole lot. I don't even know what the issues are, some of my adhesions may have been caused by my c-section in 2009 but they're not really sure what has caused them to be so widespread, other than maybe PID. But they're not interested in looking into that any further or any reasons for my heavy bleeding. And we're talking absolutely gushing, clots the size of my fist, unable to leave the house. I've complained to the consultant secretary, and asked for the MRI refusal reasons in writing. I'm on a waiting list for more surgery to remove the adhesions and repair my bladder which is severely affected, but in the meantime I don't know whether to get a second opinion or even what the process is for that. So unfortunately I have no advice, I just wanted to say you're not alone with the ifs, maybes, and the seemingly don't cares.
It's so frustrating isn't it. My local consultant basically laughed at all my notes because he himself agrees it's a shambles but he just wants me to wait to see the specialist because it MIGHT be beneficial were his words. I'm not really interested in MIGHTS anymore. I had my tubes removed around 8 years ago now as I didn't want any more children and couldn't take any pills/implants/coils due to previous issues with them all (drs orders) my tubes were buried in lesions and attached to my abdomen (never had a c section but had ovarian cysts removed) having them removed made my symptoms improve massively. It's only now I'm back here and actually in a worse position.
I dont care if it gives me 2. 4 or 8 years relief having a hysterectomy It's better than no relief that I have now xx
I do. I then have a follow up letter I can share too saying its not concluded and needs re reviewed and it MIGHT be beneficial to go to a specialist but in the meantime they will discharge me 🤪
I had an abandoned hysterectomy due to it being all fused together. You really need all the information and everyone there . They had no idea about the stage 4 endometriosis when they went in and it was tough coming round after the operation and finding out they couldn't do it. If they'd done an MRI they'd have seen the mess I was in. Wait and get the right people in the room. I know it's ruining your life - I have hemorrhaged all night and I'm off work today. Keep going xxx
Hello. I’m in a very similar situation, I have stage 4 DIE with a lot of bowel involvement.
I reached a stage where I just thought “I don’t actually care who does it I just want it sorted”. Unfortunately my nearest hospital weren’t willing to touch it and the gynaecologist admitted my case was too severe for him to even attempt.
I therefore have also had a very long wait to see a specialist and now another long wait for colorectal. They then have to work together to come up with a plan.
It’s incredibly frustrating, I relate 100% to the being drugged upto the eyeballs. I’m on pain relief every day and have a very strong one that is supposed to be for flare ups only but it’s turning in to almost every day is at flare up level pain. I spent yesterday feeling anxious and guilty for the amount of pain relief I’ve been taking.
I would say it’s probably worth holding out for the specialists as when my last excision they damaged my nerves and left me in constant pain which I’ve been told will be forever. Plus the bowel involvement too that’s been left incredibly scarred and doesn’t work anymore.
The last thing you want is for someone to bodge it and leave you in lifelong pain.
Thanks all. My only concern is they aren't actually sure if it is DIE they say it can't be rulled out but it also can't be confirmed from my MRI but is that due to whoever is reporting it also doesnt understand endo? I dont know. So I mainly wanted to push for a lap to confirm if the specialist is actually required rather than wait and find out it isn't actually fussed together. As we all know it's not a quick wait it could be 3 years before a specialist can do surgery and I honestly couldn't get through that wait I'd have to take a loan and go private but IF its not DIE why are we waiting. I understand the specialists are best but if there's something we can be doing in the meantime why aren't we. I cant get a second opinion on my MRI as I was told the by the specialist clinic they will not comment on it as I'm not their patient yet as I havent had my initial consultation 🙈 it's a 3hour journey and so I will be devastated if I get there for them to say we need to start from scratch and the last year has been for nothing 😵💫
Sorry I know that's a ramble I'm just completely at my lowest it's destroying me as a parent. Partner. Employee I genuinley feel like I dont know how to go on waiting for the next horrendous day
What will you again from full hysterectomy? Nothing at all! There are many issues with having a full hysterectomy which includes nerve damage, bladder and bowel issues, sexual issues, hormone replacement issues. A a shortened life cause by the lack of hormones. A second operation due to the sling which hold other organs in place drops. On a positive not all these things above can happen but a Full hysterectomy is really for a older person when there aren't choices available!
The latest research shows with women with bad Endometriosis the problems, pain continues and it does not stop Endometriosis!
Thank you 😊 like mentioned they arent sure I have endo. Its unable to be confirmed or rulled out via MRI. My consultants words were " just get a hysterectomy" I'd like to think they wouldn't say that if there was anything left for us to try. We know my ovaries are a huge problem and have been for 20yrs. I personally feel it could only bring a benefit as my life really isn't a life atm. However I believe a diagnostic lap should be carried out so we have facts not ifs and maybes
My Ovaries, pain , cysts have been a on going issue with Endo. I feel you need to come to terms with your illness. It is part of you. It's not going to disappear. You as I have to work with the illness and make the best of the crap. For years I put so much stress into how I felt. It got me nowhere I learnt overtime not to get upset cos that just made exhaustion earlier. Endo is a very debilitating disease. Few understand our suffering. A broken arm, people make allowances and ask after you but Endo is generally hidden, its on/off. Are you going to mention it or is your partner going to say, perhaps they can't go there any longer or a family member think you're a hypochondriac as do some doctors! I can't believe the years this disease has been known now, still women suffer yrs without diagnosis or help!
It's so painful. It's almost impossible to have a job or a happy life, a man thats willing to share for long.
Thank you, however I don't think you can push your illness, your symptoms ond your diagnosis onto my situation we are all individuals looking for support which unfortunately I don't feel your comments give. I am sure I will "come to terms with ny illness" when I have a definitive diagnosis and a way forward. I personally will put alot of energy into fixing my situation because I will not have something manageable ruin me.
Just an update, I seen the consultant in my local hospital he has put me onto zoladex starting this week and going to do and investigative Lap, so from this we will have a full picture for when I eventually get to be seen at the specialist centre. He agreed I should not be discharged locally until we have all the facts which the investigatve lap will hopefully give us. He explained my hospital do not have the expertise to deal with endometriosis but they also dont have the expertise to diagnose from imaging. The lap will be able to confirm if my bowel is fussed to my cervix (which is the main concern) I also ended up having an endometrial biopsy at my appointment as my symptoms linked with my CA125 blood results needed further investigation.
Thanks all. If anyone has any advice/info on managing life on Zoladex please let me know xx 😀
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Should I push my GP?
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