I'm not used to posting on here but hi, I had 8 months of prostap then laparoscopy to remove endo which didn't bring me any relief, I've just had another 6 months of prostap which still doesn't seem to be doing anything, I lost my job due to being off sick a lot and when I was in I struggled to do the work as it was quite physical, so after 15 months of not working I recently started a new job (desk job) it's been hard as my bodies not used to it but I seem to be coping with it better than I thought I would, the trouble is I saw my consultant on Friday and he now said he recommends a full hysterectomy 😕 I'm 36 unmarried and don't have any kids, I had a feeling it was going to end like this but hearing him say it has knocked me for six, he's given me a month to decide but I really don't know what to do, I just want my life back!!!
Hysterectomy or not!!: I'm not used to... - Endometriosis UK
Hi, a hysterectomy us not a cure for endo, if you are under a gyne and not a BSGE specialist, it's possible he has missed endo, ant that a thorough excision job by a skilled endo surgeon called help, even if you are going to go ahead with the hysterectomy you would still need to be 100% clear of endo, otherwise it can carry on growing with or without your overies, due to your age they would probably leave your overies in, as you would need hrt fir years after your hysterectomy,
If I was you I would ask fir a 2nd opinion,
I have endo and had a hysterectomy for Adenomyosis in July last year, I'm still in daily pain, I beleave my endo wasn't dealt with thoroughly.
I'm now under a BSGE centre and am awaiting my MRI results on Friday,
Good luck with your decision, but please make sure you explore every avenue,
Thank you for replying it has been helpful and I'm defo going to be looking into it more, my consultant told me they'll be taking everything including ovaries as they're quite badly damaged and he did say I would be on hrt straight after for a very long time but he did also say I'll be free from pain, but will look into a second opinion, it's a lot to go through to not have a good result at the end. Thank you for your help😊
Hi, I am 36 and had a hysterectomy last year. I would definitely get a second opinion from the things you have mentioned. I was on prostrap previous to the hysterectomy, I was told if it did not work then a hysterectomy would make no difference. As the previous lady said excision can make a huge difference. I have had severe endo and adenomyosis (i had a bowel resection). I would recommend finding a specialist endometriosis surgeon before making any decision. I had one of the top surgeons in the country and I absolutely trusted him. I had 11 operations in four years, and I eventually decided on a hysterectomy as the adenomyosis was causing so much pain. I thought I had made my peace with not having kids before I had it, but nothing prepared me for the grief I felt afterwards. I wish you all the best xxx
Thank you so much for replying, I can't bear the thought of going through a hysterectomy and finding it doesn't make any difference, I'm seeing a different doctor on Friday so I'm going armed with a lot of questions and going to look into an endo specialist. Thank you again 😊
Please update after appointment. I am in the same boat. Horrible ovulation time pain, I have not been diagnosed with endo because they haven't looked inside. I have had an ultrasound and MRI but they don't show endo. I am almost fifty so we decided to take out left ovary where pain is, the uterus and tubes. I also have adenomyosis . My doctor couldn't guarantee that this will resolve the pain, but I am desperate. I will be having minimally invasive surgery done robotically so recovery shouldn't be too bad, but I will be so upset if this horrible pain is still present after surgery.
Hi, I will let you know what happens, I was just the same, leading up to my first surgery to remove the endo, I got my hopes up believing it would solve it all but it didn't, but that doesn't mean it will be the same for you as everyone is very different, it's easy for me to say to you try not to worry until you know for sure but here I am doing the same. I have an app tomorrow so I can ask some questions im sure I'll feel better after that. If I've learnt anything lately it's ask as many questions as you can think of when you go to your appointments, since Friday my head has been in outer space and that's because I just heard the word hysterectomy and took it and it's only when I've heard from the lovely ladies on here advising me to research more I've now got a lot of questions 😊
Hello, I am sorry you are going through this. I am also 36 and have just gone on the waiting list for a hysterectomy. I do have 2 children and had tried for years to have another but after diagnostic lap last October I discovered I am riddled with endo, my tubes are blocked and my uterus is too much of a mess to safely carry a baby even if by some miracle I did conceive.
My advice would be to talk to as many people as possible about all of your options and like someone else has mentioned get a 2nd opinion. I got a second opinion quite quickly with the NHS. You need to be sure of your choices and the reason you are having a hysterectomy. I have decided to go for it because my reproductive organs are no good to me and they are going in to remove as much endo as possible, one ovary is so scarred and covered in cysts they couldn't see it during lap so if it did ever turn cancerous it would be harder to spot. I do have a lot of pain a bit like being in labour but I have lived with it for over 20 years and to me I can cope with that. What I can't cope with is I also get very heavy bleeding and flooding which stops me from leaving the house, I also bleed a little daily and am fed up with it.
I think most people on here would recommend getting yourself referred to a BGSE centre. I didn't do that but did thoroughly research my surgeon who has done extensive work with endometriosis patients and am confident in him and that he can meet my needs.
There are so many options and it can seem very daunting to begin with. I have chosen to keep my one good ovary if they can unstick it from my uterus! so I have a natural menopause. My surgeon has explained to me in detail all of my options from having everything removed and excising endo to keeping an ovary and cervix and perhaps having more surgery in the future. All risks have been explained and I am happy with my decision. I have chosen to have the surgery which will benefit me the most without bringing too many risks.
I've talked to my Husband, friends and anyone else that wants to listen! It's a big decision and you may find a surgeon that can treat your endo without a hysterectomy. I know it's boring but it's research research research and asking questions about everything.
Also even though I have children I was offered counselling to help me come to terms with the finality of having a hysterectomy. I chose not to as after years of trying I already knew I would never have another. Maybe it's something you would consider.
I really hope things go well for you xx
Thank you for replying, I've found your reply to be very helpful, the surgeon I now have is new as my previous one left the trust the other one wasn't an endo specialist and I wasn't that keen on him I always felt like I was trouble to him, this new guy seemed really nice and and was very thorough but I don't know much about his work so I am going to research him, it's such a hard decision and so am going to find as much info as I can, so I will take your advice and research. The only part of me that's not been damaged is my tubes everything else is wrecked and he said my chances of getting pregnant are near zero. I just want my life back and just wish I didn't have to go through all that to get it. But thank you for your advise it's much appreciated 💐
I wish you didn't have to go through it either. Going over all of your options, your reasons for having surgery and your expectations afterwards will help you to feel more in control of the situation and help you to get through it.
It seems unfair that you have to take control and get the right treatment for you. It would be nice if someone could magically tell you the best thing to do and what the outcome will be.
I hope you get the best treatment possible, take care of yourself and let us know how you get on.
Hi my name is Claire I had a Hystorectomy 2 weeks ago I had zoladex for 15 months an have had 6 laparoscopy I am lucky to have 3 children but I couldn't put up with the pain an the pain meds any longer I'm recovering at the moment but the pain in not like what I had an I can see the end at last I had my ovaries removed at same time I'm also 36 an can't wait to get my life back xxxxxx
I'm due full hysterectomy prostap made me so ill headaches balance