Are there any woman who have had a hyster... - Endometriosis UK

Endometriosis UK

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Are there any woman who have had a hysterectomy and are growing Endometriosis more then before ?

songbird27 profile image
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I had a hysterectomy 3 years ago to get rid of my Endometriosis. The past 2 years have been hell . I have 5 laparoscopies since then . My last one was 7 months ago and I was stage 4 Endo . My surgeries only seem to last 6 months before I am doubled over in pain along with my stomach distended to where I look 6 months pregnant and makes it hard to breathe because it is pushing up on my lungs. I have had every test to rule out any other health condition's that I may have with it . None . I have had hormone shots to laps and Hysterectomy. Can someone please shed some light on this for me , because it has stolen my life and the only thing keeping me here is my 12 year old daughter . I'm exhausted ! Please someone give me a glimpse of hope , I took 10mg of Percocet at 4:30 and I am in agony !!! Thank you in advance

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songbird27
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hayls profile image
hayls

Hi

I have avoided a hysterectomy so far so can't help you with that other than in the UK the top endo specialists do not recommend it for endo unless you have extensive and complete excision of all endo at the same time, actually cutting all endo out not burning it - not sure what method youve had in your laps but if it was burnt or lasered instead of being cut out then that could be some of your problem as that method only removes the top layers of the endo, it doesnt totally remove it meaning that it can and often does then regrow. As part of excision surgery there are also some specialists that can also strip the lining of the peritoneum which removes all seen and unseen endo which is good as not all endo can be seen by the naked eye, I recently had this done so am keeping my fingers crossed! The endo specialists here also agree that a hysterectomy will not cure endo, unless you are very lucky and it is confined to your womb only, as any endo that remains will still grow from oestrogen remaining in your body (eg. if an ovary is left behind, oestrogen stored/formed in fatty tissues in the body or from hrt add back).

There are several ladies on here that have continued to have endo after a hysterectomy so hopefully they can help you more with their experience x

songbird27 profile image
songbird27 in reply to hayls

they took everything and its 8 months later and I am in massive endo pain . My obgyn pretty much wrote me off and sent me to a colon surgeon to look behind there. I have no quality of life what so ever. I saw him today and he wants to do it but told me all the risk and it is a major surgery. I just wrote a lady who had an MRI and it showed she had Endo throughout the inside of her abdominal wall. Here in the states well where I live , on the east coast , the Drs say you can not see it like that , that they have to go in and look. Is that true that Endo can be seen in an MRI ? I had the Robot surgery . I cant live like this any more. My sister was diagnosed with breast cancer in January and she is cancer free and having her implants put in by December. I am growing Endo , been to the ER 4 times in the past 2 months. My family from England came for 2 weeks and I thank The Lord I had pain medicine to see me through. I hate the way that crap makes me feel. I am wondering if I get duel citizenship through my husband and came over if they could fix me .

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