Endometriosis UK

Hi new to the site

Hi I've just joined up today. After visiting my gp who were concerned about ovarian cancer I got fast tracked through and had my laparoscopy on Wednesday. The surgeon said I have severe endometriosis, a lot of scar tissue and that my bowel and womb have fused together so she's referred me to another hospital that specialises in this for removal. Has anyone else had this and did you end up having just the endometriosis removed or a full hysterectomy? I'm nearly 38 and don't want any more children so I'm open to either option. It's all very new to me so any advice greatly appreciated x

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Hi Mandy, I am also new to the site.

I have had surgery for removal of adesions due to my endo and each time they have surgically freed the organs however I was told it was never a long term solution. The scars just reform. I am now awaiting a full hysterectomy. Just having doubts as this surgery does not guarantee freedom from all the problems the endo has caused. Plus HRT is not the best!!! It is definately a balance of the two evils I think. Being in a chemically induced state has definately reduced pain. Hope you get sorted

Take care

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I had a similar experience and was referred on to a bsge centre in London where i had 2 further surgeries. I had an exploratory surgery where they drained the cysts on my ovaries, excised some endo from my bladder and fully mapped out the disease in preparation for the second, which was a hysterectomy and oophorectomy with extensive excision from my bowel. I had this done back in March, and I was 39 at the time, so I went immediately into menopause.

Whether or not this surgery is the right choice for you depends on all sorts of things and isn't really something you will know until you've been seen by the specialist. I had adenomyosis, which is endo in the muscle of the uterus, as well as extensive endometriosis, and my consultant basically said that although they could just excise the bowel endo, this would leave raw surfaces on my uterus and bowel which would stick back together as they healed. This would then mean that if I needed a hysterectomy for the adenomyosis later on I would have to have a bowel resection as they would not be able to separate the bowel and uterus for a second time. The oophorectomy was recommended because it reduces the likelihood of recurrence and further surgery to 10%, so again this was to protect my bowel. I had reached a point where my pain was out of control and I would often have to go to A&E for pain relief, I was bleeding so heavily I would have accidents and couldn't leave the house, and none of the drug treatments worked well enough so I really didn't have any other options.

Having had the hyst and oophorectomy, although it has been brilliant for me in terms of pain relief, I would say that it is something that should be an absolute last resort and if there is any other option, that should be explored first. A hyst for endo is not like a routine hysterectomy. It is a long and brutal surgery (mine was 5 hours) and the recovery is difficult. Surgical menopause is also really, really hard. If ovaries are removed at this age you need long term HRT to prevent osteoporosis and it is not the same as having ovaries. It is a bigger issue than just fertility - it affects your sex life, your continence and your mental health, as well as your long term health.

If you want to know anything else about it please ask.

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Hi Mandy79

Well I bet your relieved it’s not cancer. I had the same as you level 4 my bowel and uterus stuck together. I had the operation in August 15 to remove it and it was successful. I didn’t have hysterectomy though as I haven’t go children. I will always have endo but the pain is much better now.

Good luck with your next appointment and feel free to message me anytime with any questions. Take care xxx

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