Treatment suggestions please??

Good Morning Girls,

I had my 3rd lap last Thursday to be told my Endo is very extensive and everything is stuck to everything in one big sticky mess so hysterectomy is my best option now. At the time I agreed to go back in 6wks and discuss the surgery but over the last few days I can't help wonder if there is a better option.

I am one of the lucky ones as despite having severe endo it gives me very little pain so the only goal of my hysterectomy would be to stop it spreading any further but surely there must be a medicine based treatment I could take to stop the growth rather than going through extensive surgery?

I know there is loads of different treatments i could try but i would love to hear from you all to find out which ones you have found to be most successful.

Thanks

Tracyx

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  • You could go on a medication to induce a temporary menopause however if you do your research you will find that most of the medicines for endo can only be used for a short period as they are highly toxic or can cause long term side effects including bone degeneration.

    In your case, things are bonded together and no medicine will help with the pain of adhesions. Unless you go on long term pain meds which again have long term side effects including damage to the stomach lining. Surgery is your only option for a pain free life without medicine.

    That said, many experts in the field of endometriosis do not believe hysterectomy always solves the problem. Having your uterus removed will only help a condition called adenomyosis (Endo in the muscle wall of the uterus). Not all women with endo have this condition. Removal of the ovaries puts you into surgical menopause. The benefit of this would be that you stop menstruating and therefore stop the active bleeding in your pelvis. You also would have reduced oestrogen levels which endo is sensitive to.

    This issue with this however is 1) if you already have extensive scarring then even if you stop bleeding most of the damage has been done and your scarring is probably causing your pain 2) you will go onto hormone replacement so you will not be completely free of oestrogen 3) removal of the ovaries at an early age increase the risk of heart disease, dementia, some cancers and oestoporosis.

    Finally a hysterectomy will not solve any endo on your non reproductive organs eg the bladder, bowel, diaphragm, ureters or pelvic lining.

    If you read the following NHS document produced in 2013 you will see that your best bet is to be seen by a specialist BGSE centre. These centres have a group of experts including a urologist, bowel surgeon and gynaecologist. They can work together to perform a radical excision. This procedure involves removing every scrap of endometriosis and parting all adhesions whilst causing minimal disturbance to your vital organs. The NHs recommends that this is the gold standard treatment for severe endometriosis but it should only take place in one of 17 BGSE centres to avoid complications. Here is the document england.nhs.uk/wp-content/u...

  • Hi again! Just re-read your post and see your not in any pain. That's really great and yes I think you should avoid further surgery until you have to. Unless your endo is causing any issues to your internal organs which may worsen over time. Further surgery is a risky undertaking and I think it is only worth doing so when there is a clinical need eg pain or risk of damage to internal organs. It still might be worth getting referred to a BGSE centre for a second opinion though.

  • Its a long shot but there is a homeopathic remedy for adhesions (sorry I can't remember the name of it), my ovary was adhered, started taking this remedy, next scan no longer stuck! It was a really young adhesion though. May be worth investigating rather than having major surgery, all the best xx

  • Hi there, I had a total hysterectomy 12 years ago, and came on the site today to see if anyone else is experiencing the same as me and what they have done.

    I would think very carefully about a hysterectomy as for a significant percentage of women it is not a cure! It has taken me a very long time to get any consultant to accept this. It was hard enough to get a diagnosis of endometriosis in the first place to get them to accept that it hasn’t gone away has been even worse.

    As you aren’t in pain and unless it isn’t sticking together other organs like your bowels or bladder then maybe you should delay a hysterectomy for as long as you can. Unfortunately mine was so severe pain wise and it did stick other organs together, my bowels were stuck to my uterus and had been ripped apart by the deposits and twisting. I delayed it as long as I could and used the Progesterone only coil, which is basically supposed to put you into a menopausal state and stop your periods, but never worked for me the only difference I felt was my periods were a little lighter but that was it. Also due the damage caused by the deposits the coil became meshed into my uterus and may actually have caused even more damage.

    If you do opt to go for the hysterectomy make sure you do have a multi disciplinary team doing the surgery, unfortunately I only had a urologist there with my gynaecologist but would have benefitted from a bowel specialist as my bowels were completely invaded right down to my rectum. Also make sure that they use some sort of barrier material to try to prevent adhesions. I have been left with severe adhesions around my bowels which still cause me to nearly faint having a bowel movement and if I am at all constipated it will result in the adhesions ripping which can be extremely painful. Even if I twist in a particular way they will rip.

    My hot flushes continue to this day and at some points can be every 20 minutes and hot flushes really doesn’t explain what it is. Heart palpitations that make you feel as though your heart is about to jump out of your chest, a burning spread of heat across my chest, neck and head as well as the sweats that leave me absolutely drenched. Sleep has become a problem as I constantly wake up with the sheets absolutely soaking and any extra heat will set a flush off even a cuddle.

    I was persuaded against my better judgement to start HRT quite soon afterwards, I would delay that as soon as possible because any reintroduction of oestrogen will trigger of any remaining implants of endometriosis. I didn’t’ stay on it long but now wonder if I hadn’t used it would I still have endometriosis. Obviously you also have to think about osteoporosis and vitamin supplements. Fortunately for me I am part of a study and so my bone density is checked regularly and there have been minimal changes.

    The other thing that isn’t talked about is the potential effects on your libido. I didn’t’ have a sex life pre hysterectomy due to the pain it caused so was actually looking forward to exploring this side of my life. I had to ask my consultant about this the information was not given and it was something that I found quite difficult to talk about. I now take Testogel which isn’t actually licensed for this use but you can use it if it happens and for me it does work.

  • Thanks Girls,

    I was told by my surgeon that my tubes, ovaries and bowel are all badly adhered to my uterus so my surgeon is shocked I don't have any pain or bowel problems. He said that the adhesions are so bad that separating them isn't an option so now my choices are a hysterectomy or nothing and even then he said he is just a GYN surgeon so he would need a bowel surgeon in with him to deal with the bowel.

    Before my lap last week my goal was to preserve my fertility to allow me to have another baby but now with the extent of the problem my goal is to deal with it as safely as possible as I do currently have a 4yr old so being healthy for him is my top priority now.

    Tracyx

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