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Endometriosis UK
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Tales of a stage 4+ endo warrior

Hello Endo Warriors

I wanted to share my story as so many of you have given me the courage to do so.

I've always had painful debilitating periods, the usual over the counter and prescribed pain relief and 'IBS' treatments didn't work. Luckily in 2003 on an overseas trip I discovered the magical powers of Naprogesic which made life bearable every time I had a period.

My endometriosis diagnosis was in 2013 following an emergency referral from a newly qualified GP and I've had 3 surgeries so far... May 2014 should have removed endometriosis and cysts but they were so big they only drained them and I returned Sept 2014 also having an appendectomy. Between those surgeries I was on Prostap/Zoladex plus HRT GnRH agonist add on which caused night sweats and some other symptoms but think it helped.

The MRI in Apr 2017 showed severe endometriosis returned with a vengeance, distally blocked fallopian tubes, plaque everywhere but mostly all in my womb, complete obliterated pouch of Douglas, ovary stuck to outer anti flexed uterus, large intestine, colon and other bowel rectovaginal issues. Surgery in October 2017 should have helped but the multiple intramural subserosal fibroids (which I always questioned) were now so large and hard blocking access to everything only my cysts were drained and the bowel team were sent away. How wasn't this picked up in the MRI! So yes you guessed it I'm now on the list to see the fibroid/fertility specialist and I'll probably need two surgeries instead of one. I just can't understand how things became so bad within 3 years from the initial diagnosis to this? Back in 2014 I was advised to try for a baby with my then boyfriend but things didn't feel right so I didn't, was I wrong?

I regularly take Co-codomol, tramadol, naproxen, just started Gabapentin and on my next period Esmya. My first Mirena was fitted in 2013 which was great, no periods, less pain but I'm now on my third and it's not helping, I'm having regular bleeds/brown discharge and periods. I stopped taking the pill last year as I felt really unwell on it and I want the Mirena removed to see it it makes a difference as not happy on it and it isn't treating my fibroid symptoms and pain. Have any of you taken alternative/herbal remedies such as a probiotic or serrapeptase? I've been thinking of taking these to see if they help.

With all that I also suffer from hypothyroidism, fatigue, muscle and joint pain, hearing loss, weak bladder (lucky no endo there), headaches, tinnitus and I'm feeling down with other problems life has to offer and struggling to stay strong. Doubt I'll ever have children and I constantly and fiercely tell the BSGE I don't want a hysterectomy and I want children (do any of you feel you have to justify this?!) also just split with my boyfriend who was such a massive source of support I'm dreading facing this alone. I do have the love and support of family and friends but it isn't the same.

Apologies if I'm rambling on or sound ungrateful there's just so much to say, I know whatever the outcome I'll find a way to shine bright again. Would also like to say that the staff in the Bristol BSGE are great and are doing everything they can it's just frustrating.

5 Replies

Big hugs from a fellow stage 4 sufferer.

I've been trying probiotics after suffering lots of digestive complications following my big excision op in July.

The one I tried was reccommended by my nutrionist and the strain has been well researched and shown in studies to help with the immune system apparently. It's called Culturelle and the strain l. rhamnosus GG. I think it has helped though I've been trying other things too like cutting out gluten so it's hard to be sure.

I'm also looking to add in a mix of optibac extra strength and bio kult which also have good reputations.

This lists a number of stronger probiotics with some research backing them up. I sent a list of questions to them explaining my background and certain dietary requirements. Optibac were the most helpful with a A4 length letter in reply and Elixa the snottiest.


1 like

Thanks for your reply Starry.

Ive heard of Optibac seems quite expensive, willing to try it if it helps.

How are you following your op?

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Hey x

I'm sort of ok but not. The op itself went well, I escaped bowel resection and stoma, but the nodule was bigger that expected, had damaged my vagina so bad I had 4cm2 of it removed and had a partial vulvectomy and repair. Surgery itself went smoothly though was extensive.

Very unfortunately I got viral meningitis 4 days after and spent a week in Hospital very severely ill with that which caused lots of secondary issues. Since then i developed several intrusive post op complications, particularly coxxyx nerve pain, reflux esophagitis (causing me all sorts of eating issues) and severe anxiety. I have what I think is a niggly gallbladder and was told this Friday that I have a 4.5 cm ovarian cysts secondary to a hydrosalpinx. I still can't do any exercise, even a jog triggers pelvic pain and am kind of depressed.

On the plus side, at 5 months my fatigue isn't as bad (though I'm still off work sick again ATM), my back pain much reduced and I can bend more, my bladder issues have vanished and I have just finally started to attempt marital relations which although extremely painful is now at least actually physically possible, which it hadn't been in a long while.

Sorry it's bit of a checkered report really, no galloping off into the sunset for me quite yet. Hoping 2018 brings better things.


Oh wow, you've a hard time of things at the moment. Thinking of you will look out for your updates and yes hoping for a better 2018. 🙂

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Thanks cheetah, I definitely didn't pick the lucky straw :) feeling a little more hopeful than I was. Fingers crossed. Xx


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