Question

[Lauren-1998]

Is anyone not on hormones and birth control for endometriosis? And if so how successful has it been? As I have got the Mirena and my endometriosis tissue was taken out in July last year however all of my symptoms are coming back although I have no periods which is great but I get pain all of the time.

[Clara12]

I had been trying to manage mine without anything hormonal but to be honest my pain has been too severe. Cramping all the time and my periods are a nightmare. I've just gone on the pill which I'm hoping at the very least will calm my periods. Been getting 13 day long, extremely heavy ones which I can no longer bear. Hoping it improves my pain too but I was very reluctant to do it initially but equally as concerned about the number of pain killers I was taking (often to little avail) so it's really a catch 22 . . .

[princessk09]

Hey, I stopped talking Birth control as I was suffering horrendous side effects. However my pain is still bad and now it happens nearly every day. I’m waiting for my first lap.

Not being on birth control isn’t helping and being on birth control pills wasn’t helping either haha. So I’m kinda stuck xx

[Rupawan]

Hi, I have been managing my endo and adenomyosis since being diagnosed in 2014 without anything from the doctor except for -

Naproxen painkiller (only on my period days and the occasional pain during ovulation) and cyclokapron (a prescription for lessening the bleeding) which I have since stopped and taking Shepherds Purse tincture in replacement (wow, it works!).

I vehemently refused all kinds of synthetic HRT suggested from the doctor after being given Visanne (luckily just for 30 days) that nearly drove me insane with dark suicidal thoughts and various negative symptoms.

My ardent research yielded some supplements that I swear by. I use a progesterone cream (paraben-free) that I purchased online. I also watch out for dangerous chemicals in all my toiletries too. My diet remains pretty much the same but I cut down on sugar. I'm thankful my due diligence in taking all those supps has reduced my pain level from a 10 to level 4 these days.

I'm 48 and I am very hopeful I can ride it through for another four to five years before menopause hits me.

What do you intend to do with coping the issue? 🙂

[Lauren-1998]

I just don't see any point in having my IUD as all of my symptoms are starting to creep back: painful bowel movements, lower back and pelvic pain, bladder problems such as needing to urinate every 20 minutes, pain when emptying my bladder in my pelvis as well as my urethra also about a month ago I had some blood in my urine which I spoke to my GP about and they checked to see if I had an infection which I did not and then this happened a few weeks ago and both times I was not on my period, I also have and excruciating pelvic pains during ovulation to the point where I pass out.

[Lauren-1998]

I would really like to find some sort of treatment such as acupuncture just to manage the pain as I am not worried about having children, sorry if this sounds harsh but I have always wanted to be a nurse, which I am currently studding for at the moment. I just hate having something which causes so much problems and it all just feels out of my control which I hate! I just feel constantly like a lab rat as the doctors say try this in hoe that it will work.

[Starry]

Hugs xx It sounds like you need to be re referred. Was your excision in a bsge endo centre last time and did they leave any endo eg due to proximity to the bowel?

I don't take hormones since my treatment surgery as like Princess I react badly to them.

I have a very strict diet these days and no alcohol, no gluten, vegan, minimal caffeine, refined sugar etc and I take vitamins d a and an immune boosting Probiotic.

My bladder issues have not returned at 8 months, though my bladder was only mildly affected. My bowels are temperamental now but not experiencing the prior fainting on the loo, but the fatigue never left. I think it will take many years for my endo nodule to regrow to the size it was though. I'm working to regain weight loss still though from my post op meningitis.

[Lauren-1998]

My surgery was done privately by a BGSE specialist , it was removed from my POD where they found nodules of endometriosis, my pelvis where they also found nodules and my ovaries. I am just so worried about it returning in the future. I have also been referred to urology for a cystoscopy 😖