So i have stage 4 endo of the bowel and multiple adhesion. Recently i ended up in hospital for a week and after an mri they discovered that my womb and ovarys have fussed together. I have been in constant pain for the last 7 years and i just can't live like this. I want children but I'm looking at it rationally. I don't want children for another 5/10 years. By that point my body is going to be wrecked, I'm not going to be in a financial place to be able to afford a child, i don't want my child to have to care for me (that isn't a dig at anyone and i know that money and health aren't what make you a good mum but i know it will make life easier) and i don't want to be bed ridden for the next ten years. I know it won't be the perfect fix but it will mean i can get some sort of a life back and adoption and surrogacy are both options. I guess I'm just looking for some advice/reassurance about the whole situation? Any responses would be appreciated.
Hysterectomy at 25?: So i have stage 4 endo... - Endometriosis UK
Hysterectomy at 25?
I’m 30 have one child already and am thinking of a hysterectomy. I wanted more kids but I would rather pay the price for my own health. Only you know what is best for you lovely. I do know that a lot of surgeons won’t do hysterectomies on young women xxx
Hi @Emmahuh ,
Sorry about all the pain you are experiencing. I know exactly how you feel as I have also been diagnosed with severe endo and adhesions and my organs fused together as well. My gynea couldn't do anything and he referred me to UCH endo centre but because we are looking to get pregnant, they decided that we should try the IVF route first and not do surgery to remove the endo.
I know it feels really hard and you want it over and that is why you are considering a hyst but please think long and hard and make sure you have no doubts before doing it. Hysterectomy is not a cure, and many women still have endo and experience a lot of pain even after it.
I haven't done another surgery to remove the endo but I have personally done a lot of research and made a few changes in my life and I'm slowly regaining it back. I changed my diet to include lots of vegetables like kale, spinach, broccoli, cauliflower etc and my veggies are the biggest portion in my plate. I stopped/minimised eating wheat/gluten, dairy, red meat, alcohol and most importantly sugar. Many of us endo sisters spent years using painkillers so some of us have damaged our stomach lining and we struggle a lot more with our gut, bloating and digestion than people without endo. Also endo is a manifestation of high oestrogen so we have to reduce anything that increases oestrogen in our body and eat more of things that help our liver detox and flush out the excess oestrogen. I also got rid of a lot of chemicals, toilet cleaners, skincare products because many of them have some chemicals that mimic oestrogen and confuse our endocrine system.
Finally, I take supplements like omegas, turmeric and ginger, serapeptase, prenatal, probiotics and aloe Vera to sooth my stomach.
I have endo on my bowel too so I know that horrible pain during bowel movement and once I included loads of veggies into my diet, it greatly reduced.
I know this is a long post, but I want you to know that you are not alone. I know exactly how you feel. Before you do a hyst, try these things first and then see what happens. Please know you can message me whenever you need to.
Lots of love xx
So I have already switched to a vegan diet the about a year now to see if that would make a big diffrence. I've noticed a little but not massively. See i do want a baby but not for like the next ten years and i can't be like this for that long. I know it won't solve all my problems but surely it will stop it getting any worse?
I understand perfectly. I think you should see a BGSE endo specialist and look into a laparoscopy to excise the endo, remove adhesions and also unstick your organs. That might be a good first step. It might give you relief for some time and then maybe you can also look into natural progesterone / BC after that to stop the periods and minimise the monthly bleeding and adhesions. This might help. I know the people at UCH are awesome so maybe you can ask your GP to refer you there?
All the best.
See I've already had 3 laps and been on all the hormone treatments there are. Including gnr therapy but nothing has stopped it.
Oh I'm so sorry 
I had hysterectomy at: 28, but could not have my ovaries removed due to my young age. I am now 64. However, I have had rectal bleeding over 44 years, with lots of blood clots. It has been like having a period out of my bowel. Medically retired 24 years ago with severe back issues. My worst issues are: severe hot sweats in the summer. Has anyone got any advice for this ? I have tried several herbal remedies but without any success. regards, Della.
Hey, I get what you mean, and feel for you, it's not easy when considering the future of our fertility.
It is tough. A good surgeon specialising in endo can remove the endo and unstick your ovaries from your uterus. They won't know what they can do though until they have a look.
A hysterectomy will obviously help the pain associated with the problems on your uterus and ovaries but unfortunately it will not stop endo regrowth. Our bodies, being mammals even males produce oestrogen; this is what endo needs to grow and when the endo is in large enough growths it produces it's own oestrogen so speeding up the growing process. There is also no correlation between the amount of endo and symptoms, nor the previous symptoms and regrowth symptoms, or the time it'll take to regrow. So having a hysterectomy could sort things for a few years, or your lifetime, or a few months in some cases. In reality it will come back
I'd suggest seeing a gynae specialising in endo excision and have a chat with them about what they can do and what you'd like then weigh up all the pros and cons as at the moment you don't know what could be done.
I have put a post up on my experience of the laps and stuff to do with how I feel about things. I haven't had a hysterectomy but I'm not considering hormones as treatment, I just want to see what happens and leave things to be for the moment. Have a read, you can either find it on my profile or search for it "All this effort does pay off - my story - hope it helps !" Just to show you that even with the stage 4 we both have things can be done, all is not lost. xx
How many laps have you had done before. Like the only reason I'm considering it is because I've had 3 already and it just seems to come back worse. Especially with the adhesion.
I've had two, one for excision of endo leaving a bit on my bowel as they needed a specialist bowel surgeon. it was up to me to have the second, I still had some symptoms so had the second lap. I have had my 4 months post op and he hopes to not see me again for another 5 years.
It depends on the specialist surgeon, their experience and whether it was excision; this removes all the endo and some healthy tissue so regrowth is a lot less. Other removals just shave off the top so leaving a lot underneath, regrowth is quicker.
In the time between the first and second lap (8 months ish) I had my left over re-stick to my uterus which they had to unstick again.
Regrowth and adhesions depend on the individual, some just regrow quicker or stick quicker, hormones may help in these cases or at least give you a few years to decide what you'd like to do. I know they don't suit everyone and aren't their personal choice.
Symptoms don't correlate to amount so you could have lots of endo with little symptoms or a little endo with lots of symptoms so you never know, it could be a little bit.
Main thing is to push for excision. Bear in mind some doctors wont do a hysterectomy, so you may be offered chemical hysterectomy to try.
Some women have 7 to 10 laps if not more in their lifetime so there's no limit, removal of endo is the only way to treat it long term, hysterectomy or hormones will just delay it a while but it will require a lap again at some point in the future. Bit pants. Some women only need hormones as it helps them get on with a normal life which is great xx
hey, I'm 32 have stage 4 endo, bicornurate uterus, adenomyosis and pcos i have 3 children was diagnosed at 21 with endo but had suffered since I started my period at 10, my first 2 pregnancies helped calm my endo down and made it more manageable but after my 3rd pregnancy in Dec 2015 it flared up with a vengeance, from the day my son was born I was in agony I felt like I was in labour 24/7 it was awful eventually I was booked in for lap Dec 2016 and My surgeon came to seer me after and told me they cldnt help me as everything was a mess and it wld have been very dangerous is they tried to take away the endo, it was all over blood vessels and uterine artery which wld have caused massive blood loss my bowel was cover my uterus was covered behind my uterus my tubes it was a big mess apparently my bladder also had it and my bladder was stuck to my abdomen wall, in their words I had extensive adhesions and endometriosis, I was told I needed to be seen by a specialist so all they cld do was close me up, eventually I was passed on to Edinburgh royal infirmary to be seen by a specialist and I was asked lots of questions about my little family ect and they decided that the best thing for me was a hysterectomy taking everything except my ovaries as I was too young to lose them, so 15th March 2018 I was taken in and I had 2 endo specialist and a bowel Dr operate on me all 3 had their own teams so there was about 30 odd drs in there just for me, a 3 hour op turned into just over 6 hours, I woke up in a private room (so much better than a ward) surgeon came to see me and told me I definitely kept them on their toes in there and the reason it to so long was cos the bleeding was alot worse than expected took forever to get 1 vessel to stop bleeding then same wld happen again for the others, so here I am 10 month later and nothing has changed I'm still in agony everyday my stomach hips back legs groin and my bladder still all hurt constantly I still get period like cramps, the only thing that has changed is I don't bleed anymore which is a relief, I'm still seeing the specialist I may be bk in this year for more surgery. my advice would be don't think a hysterectomy is going to cure u off everything even taking away the ovaries doesn't help, yes it may help and u may be 1 of the lucky 1s but u may also be 1 of the unlucky 1s like myself and a few others I know, definitely a massive decision to make don't rush into it take, you need to thoroughly think about it. good luck x
aww no sounds all horrible
it is awful, the fact I can't run about with my 3 year old like I did with my first 2 is wats most frustrating x
yeah that would upset me so much.
just focus on the positives; that you're there for them 
xx
So I'm also in Edinburgh and they have referd me to the specialist in Livingston. Is that who you were seen through?
if been to see Dr dewart in Livingston aswell he was the one who told me I had no other and needed the hysterectomy, who is it ur seeing? x
Dr dewart and veronica Davis.
he's a lovely Dr very helpful and friendly, he was amazed that with everything I had wrong, tilted uterus, stage 4 endo, pcos, bicornurate uterus, adenomyosis, hypothyroidism, holes in my uterus apparently it was how my womb developed whilst I was in my mum's womb, constant ovarian cysts, said it was a miracle I had 1 child never mind 3 lol.
When he broke news that I didn't have another option and hysterectomy was my best option he was completely honest with me and told me it didn't mean I would be miraculously cured but he was hopeful it would give me some quality of life back and take away some of the pain, not had any improvements tho, when I did have surgery I was lucky enough to have gotten Dr Jack and Dr Horne from royal infirmary they both are great surgeons x
Thank you. That has made me feel tons better about the people I'm trusting. Like I've only been here two years and the first surgery i wad given was messed up in such a big way that it has given me permanent nerve damage.
I am really sorry tohear that!
As someone who's been born w/o an uterus I can only tell you that much.
I sinceely hope that no matter what you go through, you will be in a good place. I know that it may sound a bit insencitive (I hope that it does not), but you are truly right that there are so many options and if this surgery is what you really need to go through, then you should not feel any guilt.
All the best wishes (coming from a gilr who's going for surrogacy rn)
xx
Hi there. We passed surrogacy in Kyiv. Our path leading to this decision was also not the easiest one. Here's some of my background. I have just turned 46. Dh and I started ttc when I was 36 yrs old. WE tried for half a year with no luck and this made us turn to dr's help. Unfortunately the news wasn't great. Our doc told us we were the candidates for IVF. So we moved this way. IVF #1and2 turned into bfn. IVF#3 – cancelled, poor respond. IVF #4and5 - both bfn. Heartbroken we had to move on with surrogacy. Passing it in our home country was impossible for us after all the previous IVF shots which cost us a fortune. We had to seek for some other more affordable options. Also we had to make a break from treatments and save to be able to proceed with surrogacy. That's is why it took me years to achieve the aim. We went to Ukrainian clinic a year+ ago. It's a hospitable well equipped place with nice prefessional stuff. We signed up for the standard package.We also dealt for the first time in life with mitochondria replacement therapy. (Everyone, do look onto it if there's egg quality issue).
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