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Endometriosis UK
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Can someone please help?!?!

Cut a long story short, I was diagnosed with severe endo and endo on the bowel October 2016. Had a call from the consultant today to say my endo excision operation will be early next year?!

I haven't been given anything for pain management. Just what the doctors have been prescribing me Tramadol, Codeine etc and each month I am in excruciating pain!

Am I at risk of waiting this long to have my endo treated? Is it worth paying to have my operation done privately?

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Hey x

I've just had my excision op 7 months after my diagnostic lap. Only about 10% of endo is a type to grow aggressively​, and I am not sure if that is the RV type at all. but over time there is of course some risk of it penetrating the bowel wall more deeply, required more excision. Has you surgeon said he will do an interim MRI or colonoscopy?

As you are a severe deep endo case you should be referred to pain management clinics which I believe is in the NHS contract so do push for that regardless.

If it were me and I had the means to go private and bring the op forward I personally would do so simply for more rapid recovery and symptom relief and peace of mind. But that is my personal view only.

During my 7 months my symptoms worsened a lot and I went off work sick 3 weeks before the op, so the wait took its toll.

My op was more radical than expected i had a partial vulvectomy and came as close as possible to needing a bowel resection and avoiding one. I asked if surgeon thought it had grown but he seemed to think it was more a case of just not being able to see until the op how deep it had penetrated.

Hope these ramblings help your Thinking.

Starry

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Hey Starry, I have stage 4 endo.. I was diagnosed 8 years ago.. my bowel and uterus are fused and my ovaries are fused to my pelvis.. all in all as the last surgeon said.. A real mess inside.. he said the only option for me was a hysterectomy.. I have now been doing loads of research and it appears a hysterectomy may not help, but could make me feel worse. I have been googling lots and have found lots of positive things about the full excision surgery.. (which has never been mentioned to me before) Have you felt the excision surgery has helped you? Thanks for your help!

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Whether hysterectomy helps depends on type of endo ( some endo types are able to self generate oestrogens making removal of ovary pointless) zoladex trial is usually used as an indicator as to whether hysterectomy is viable. I did it and was so sick I quickly ruled it out. From my research RV is believed to be such a type, which is why I declined ovary removal) and also on the actual source of your pain. Adenomyosis sufferers benefit well from hysterectomy if you've had those sort of pain symptoms I believe, but if your pain is caused by adhesions, nerve damage or scarring it will continue so long as they are not excised regardless whether uterus is there. Hysterectomy alone will not be a full treatment. You need excision. Are you in a BSGE centre?

My first cyst removal lap helped my ovary pain which never came back. This recent bowel surgery was only on 18 July so it's early days and I was unluckily taken sick with a serious menengeal virus immediately afterwards and rehospitalised.

That said, I am feeling mentally clearer than I have in a year and while I have post op fatigue big time having lost 9 lbs in 9 days, my current instinct is that it does not feel like the same endo chronic fatigue syndrome symptoms I was so ill with before. So far so good, so on my early-ish experience, I would recommend excision. But your case sounds more advanced and complicated that mine, which was large and deeply infiltrating but at least located all in one place

Do hunt out one of the top endo private consultants who specialise in the complex cases and get a second opinion to help you work through to a settled decision. They can work wonders. FB group endorevisited is a good place to ask for recommendations, we're not allowed to discuss surgeons on here.

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I was originally diagnosed in January 2016 and didn't have my major excision surgery until March of this year. All surgeries were done on the NHS. I had assorted hormone treatments and a combination of painkillers to help me through the wait but it was really, really hard. I didn't go private, partly because I'm not convinced the care is better, and partly because TBH without health insurance the cost of that sort of surgery with a multidisciplinary team is very high. They should be taking steps to ensure that you have support and appropriate drug treatments to help you cope in the meantime. I assume you're being seen at a bsge centre?

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Hi,

I was diagnosed with severe - Stage 4 endo - after my first laproscopy March of this year and as I went private my second surgery was exactly 2 months after the first one. It was expensive but I am now ten weeks post-op - with much less pain (apparently post-op pain can last for 6 months as endo was on ovary, kidney tubes, kidneys, appendix, bowel, rectum etc). I know the pain you are going through. Before I was finally diagnosed, I had to go to the emergency department 4 times in 3 years as I was about to pass out with the pain.

Painkillers stopped working for me. Google a "caster oil pack". It works as an inflammatory. Had terrible period pains last week (first period since before first surgery in March of this year) and the only thing that would take away the pain was the caster oil pack. it worked wonders. Hot water bottle has been brilliant too, but the castor also is better than any medication...

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Because you're in excruciating pain, you could ask your G.P. to expedite the appointment, but you could still be looking at a three-month wait on the NHS.

If you have the option of going private, I strongly urge you to do so. It will spare you considerable suffering. The longer you're in pain, the worse you're going to feel emotionally as well as physically. Additionally, endometriosis is best treated early to prevent it from advancing.

You could ask your G.P. for different pain meds if the ones prescribed aren't touching your pain.

Good luck. x

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