Treatment Alternatives- non surgical - Endometriosis UK

Endometriosis UK

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Treatment Alternatives- non surgical

SJEmilyD profile image
9 Replies

Hi

I wonder if anyone can help. I’m seeing a surgeon today to discuss my options, but I’ve been feeling really sick about it all. my consultant terrified me on Friday by saying if I don't have surgery, it will keep growing and could block my bowel which means I may have to have my bowel removed in 10 or 20 years time. I really don't want to have surgery. The first professor I saw (who's the absolute top in London) said it wouldn't get any worse. I'm not going to be scare mongered into being cut open if I can just get on with it. I (apparently) have a very high pain threshold. The only reason I went private is because of the bleeding in between cycles which scared me. I do have a lot of pain, but can deal with it. I have a book coming tomorrow about how to heal endo naturally (or at least cope with it) without surgery etc. Has anyone tried alternative treatments?

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SJEmilyD
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Milly124 profile image
Milly124

I was told by my consultant they can try to manage it by using tablets which put you into the early menopause but I don’t know how old you are and obviously everyone is different. I had a op last year and I was terrified honestly it was nowhere near as bad as I thought it was going to be, I have to have another one as they discovered both my tubes are blocked and they want to try and unblock them. But like I say everyone’s endo is different mine appears to be mostly in my tubes and on a ligament near my ovarys but my pain is extensive. Have you had a laparoscopy ? Do you know where your endo is? X

SJEmilyD profile image
SJEmilyD in reply toMilly124

Hi Milly, thank you for coming back to me. I had a lap back in 2011 during IUI treatment as they found a cyst on my ovary. When they went in, they said I had endo attaching my bowel to my uterus which they removed. I don’t remember what they did but must’ve shaved? I went to the dr last year just before lockdown as I was in a lot of pain and they said there was another cyst, nothing to worry about. I then started bleeding when I was ovulating a couple of months ago and the dr said they didn’t have my results from the hospital. When she called, they said there was a mass of dense tissue behind my uterus and I need to be referred for urgent care. I then went private to speed things up (I have Vitality) the thing scaring me is the bowel surgery as I’ve been told it’s dangerous. I’m 40 and had many rounds of failed IVF, so won’t be having children. My ovaries are also stuck to my pelvis x

Milly124 profile image
Milly124 in reply toSJEmilyD

Oh I’m so sorry it’s awful isn’t it. I know somebody who had bowel surgery and she says it’s the best thing she ever did. I’m not sure about medication if it’s already there, maybe try and have a serious chat with your consultant explain all your worries/concerns. Xx

SJEmilyD profile image
SJEmilyD in reply toMilly124

Thanks Milly. I’ve just received a book about healing endo naturally without surgery and drugs, so let’s see how it goes. Most dr’s are knife happy and get paid for per surgery, so I’m sceptical to go back under the knife if it’s dangerous. I’ll keep you posted xx

MissPickles profile image
MissPickles in reply toSJEmilyD

Surgeons are trained to operate so most of them will advise you this is the best route, if you are interested in alternatives their knowledge will be limited

If you are in London ask your GP to refer you to RLHIM (Royal London hospital for integrative medicine). They are part of UCLH and are an NHS hospital. In fact, you dont have to live in ,London to be referred, any GP can refer if you are willing to travel. Ask to be referred to the integrated womens service. They will consider emotional as well as physical aspects and the initial appointment is 45 minutes. I visited several years ago for a different issue and was prescribed a course of acupuncture but sadly it's a bit far for me to travel now

uclh.nhs.uk/our-services/fi...

There are a couple of other similar NHS hospitals around the country although most GPs are totally unaware of them. I think they are underfunded and seemed rushed off their feet when I visited but it is a unique service that's very rare within the NHS

SJEmilyD profile image
SJEmilyD in reply toMissPickles

Thank you! I’ll look into it. How are you managing now? Where is your endo? Xx

MissPickles profile image
MissPickles in reply toSJEmilyD

I'm not yet diagnosed but my pain is all right sided, right ovary, appendix area, right hip and it moves around on different days, some days barely noticeable other times more intense. I'm waiting for MRI results and colonoscopy to check if theres anything else going on on that side.

SJEmilyD profile image
SJEmilyD in reply toMilly124

Hi Milly, they’ve suggested the mini-pill and scan again in 6 months. I’m going to continue with my CBD and try some other methods. I don’t want to go down the surgery route yet. Xx

Roses2020 profile image
Roses2020

Hello,I have found that acupuncture has reduced the bleeding between periods. They also work on pain and help with making you more relaxed. I have just started seeing a herbalist as well but too soon to tell. I was recommended a pelvic physio- I haven't been yet but something else to look into... I'm affected by wheat so I have cut that out of my diet. It's all such a learning curve and it seems to change regularly! Good luck to you 😘 x

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