Hi guys. I'm 33 and have been suffering with Endo since I was 12. Had lacroscopy done 2 years ago and was told that some of the endometriosis was burned off, some cut off and a cyst was removed from one of my ovaries. Only, since then the pain has gotten worse and pain free days are a thing of the past. Mild pain is the best I can hope for and I spend most of the month in severe pain now. I saw a specialist today, and am scheduled to have an ultrasound of my rectum as the doctor thinks that the endometrial tissue is most likely growing inside my rectum. He recommended a hysterectomy, removal of my uterus but keep my ovaries, I wish to have one more child but due to mental health issues and other life factors do not believe this to be possible for me. Signing paperwork this morning stating that I understand that I no longer will be able to have another child once this is done was so surreal for me. The pain is surreal. The suffering feels neverending. Guess I'm just wondering who all out there had this done? What was the recovery like? Did you eventually find it to be all for nothing? I just want to feel halfway normal again. Right now, I feel terrified. Do you think you can feel that your uterus is missing? That part of your insides are gone?
Hysterectomy recommended today: Hi guys. I... - Endometriosis UK
Hysterectomy recommended today
Hi Gizmo, sorry to hear how u r feeling. After suffering from 17, at the age of 33 I had a hysterectomy leaving just 1 ovary& tube - I have never given birth but do have 2 beautiful girls to call mine.
Recovery was hard for the first week or so but as it was all done laparoscopically wasn’t as bad as it could have been. In honesty, I never felt like anything was missing - still weighed the same too! 😝 In my case after 6-12 mths I started suffering again with my bladder & now my bowels but even that said I still believe, in my case, it was the best decision I could of made. Xx
Hello can I ask why they never done a full hysterectomy? I have been told I will need or be given a full one & they won’t just take out say 1 ovary (which I believe is what I need going on the location of my pain). Glad you are well x
Literally because of my age, my consultant didn’t want me doing through menopause at 33. Xx
Ok thank you so much for replying xx
Hi, sorry you’re suffering. From what I’ve learned over on the endo support group on Facebook a hysterectomy won’t stop your Endometriosis symptoms. If it’s growing elsewhere it is still there and still needs excising. Please do some research and make sure you are absolutely certain this is going to help.
Have you seen a consultant at a BSGE centre?
Wishing you well x
This is a copy / paste from someone on the group:
“It sounds like you are at a bsge clinic - are you? It’s ok to name your surgeon on this forum.
I had a hyster and both ovaries out but by a general gynae so he left endo and it just carried on growing and ive had to have 3 more surgeries. The last two at a bsge centre. So yes endo can keep growing after a hyster. Having had an ovary left that would feed it but it can also produce its own oestrogen to grow. Are you on any hrt? It must be a combined hrt for endo sufferers to have the best chance of it not feeding endo. Tibolone is usually the one they start you on. Kliovance or femostan conti are ok too.
Please please please get a follow up if you think your surgeon can help. And if you’re concerned about them being able to get referred to your nearest BSGE centre. I’m assuming you’re in uk? Let us know where and we can guide you to your nearest clinic.”
I'm actually over in the US found this site looking for emotional support and advice and to try to do the same for others. I don't know what bsge is?
It’s the British society for gynaecological endoscopy. Essentially where folks go for severe endo which it seems you have 
Now I see you’re in the US - have you got Facebook? has a wonderfully knowledgeably team running it, with recommendations for specialists in the US. I wish I could help more but I can offer sympathy and I really hope whatever you decide to do helps. It’s really rubbish - I’m worried for the day I may have to make this decision.
Keep strong and keep reaching out for support 💗
Thank you. That sounds like what they plan to do but I'm not scheduled for endoscopy for another 2 months ☹️ the pain used to be severe right before/during my cycle. Now it never stops. I don't know what they expect people to do in the meantime to control the symptoms
I haven't had a consult there I'm over in the US... I've read that hysterectomy will not necessarily stop the symptoms as well, and am thinking this through very carefully. I didn't like that the doctor wanted to push the idea of surgery less than 5 min. After I met him. Made me think is he trying to cure me or just makes a bunch of money everytime he performs a hysterectomy? I'm desperate for the pain to stop.
I had a full hysterectomy and oopherectomy 3 years ago after just turning 28.
I have had no issues whatever until recently and that has been a combination of GP faults and incorrect infomation for my HRT meds.
I am having mild issues with bladder and bowel but have never thought my decision was the wrong one. It has given me a more pain free life and better self confidence.
I can only tell you how I felt after and that is simply...no different. I didnt feel Id lost anything. (Apart from the pain)
I was under a specialist endo consultant and he removed all that he could find. Mine was mistly on the back of my uterus and was traveling speedily up my fallopian tubes and had covered my one right ovary.
I do have an appointment with a urologist to check that I havent got a type of cystitis that is due to inflammation of the bladder lining, which can be linked to endo sufferers.
Wheither or not the endo still lies within me elsewhere is a mystery and if im honnest a little worry that I shelve in my head because there is very little that I can do to find it or proove its existence. (It took me 14 years + to get any help or acknowledgement of my condition dispite my older sister having a confirmed case which they were reluctant to admit or do anything for until it was rather late...she now still suffers despite having had a hysterectomy as the endo has entered muscle and organs.)
The recovery was good for me. I took time off from work, more than I probably needed but I wanted the definate adjustment period and down time.
This journey is a difficult one with hard decisions, some options are better for some but not for others. It depends on individual circumstances, health and even family history.
Being scared is normal. Dont think that its not. It is a unknown.
About children. I want to be clear that all women have their own view on children and their desire for children to be in their life and how that form is taken.
I have not had the same desire as others to have my own biological child. I have 3 beautiful nieces. I have my closest friend who has 2 of her own and fosters. I am not without children in my life.
The choice for me was clear cut. I could not carry on the way I was. If I was to want a child of my own I would find it a privilege to adopt or foster. They would them be getting a parent who was a whole person...pain free and happy.
Everyones journey is different because everyone IS different. I wish you luck on yours.
Never feel alone. Although noone can walk your path for you we can support you as you go.
Thank you for your heartfelt advice and input, adoption or fostering a child could be an option for me down the road. I'm glad your feeling better. Hugs to you
You must be at a bsge centre if you’re endo is now on your bowel. And unless endo is excised at hyster you just won’t get any relief. And no one but a bsge surgeon must touch endo on bowel.
Ok, I didn't realize there were surgeons that specialized in the endo being in bowel area thank you for your input
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