Surgery 7 months ago & even worse

[Sunflower2034]

Good Evening Endo Community

After a challenging 15 years of pushing on the NHS for diagnosis and treatment, last year I went private and diagnosed with deep infiltrating endometriosis on my uterus, bowel, abdominal cavity and ligaments.

The surgery did not help with symptoms much , and now it’s come back with a vengeance.

I have peppermint tea , physio, painkillers, eat gluten and dairy free. I am limited with holistic treatment and don’t want to try hormonal therapy basically because the synthetic hormones have worsening side effects.

Those who have had surgery for removal of deep Endo how long were you pain free?

It’s looking like I’d need another surgery privately…

Any feedback much appreciated xxx

[Earthmother1]

Hi! The problem with endo is that it makes its own estrogen, unless you can get a handle on estrogen production, the endo will grow. The way the drs try to stop this is with hormones. Hormones like the progesterone only pill will slow growth, they don't stop growth. Yes the pill does come with side effects and I can attest to that, but sadly there's always a trade off with endo. Is it better to be in excruciating pain? Or is it better to have no periods and gain a little weight and feel slightly low mood and have no sex drive, the pain you feel will be more of a dull ache, something you can live with, but at least the pain doesn't have you curled up in a fetal position or going off to a&e, there's the trade off. It sucks! Eventually over the years the pain becomes more invasive the dull ache flares up more often and you carry on adapting. It sucks! So then you become peri/ menopause age and you're offered GnRH medications, again hormone control to push you into menopause, it sucks! Unfortunately as women we have to try these treatments to see which ones work for us, whilst endo robs us of living our lives. Women's treatments are behind men's because of lack of funding and interest. It's sad but true. So all we can do is be open to trying treatments, and try to manage the pain as best as we can. As for surgery, yes it can get rid of endometrial lesion, but these lesions have roots like weeds and are impossible to get rid of so therefore will grow back, hormone treatment seems to be the only way at the moment that slows endo growth therefore, hopefully relieving pain. I wish you good luck in your journey to finding a solution that works for you ❤.

[Sunflower2034 in reply to Earthmother1]

Thank you for taking time to reply I appreciate the response. It’s unfortunate that there is little information out there to help treat Endo.

Wish you all the best! X