Non surgical treatments?

[Leo78]

I wonder if anyone can suggest any good ways to self-manage the symptoms of endometriosis? I had a working diagnosis of endo 10 years ago following an ectopic pregnancy and difficulty conceiving. I was on the waiting list for a 'find and fix' surgery, but my son came along before the operation did - so I have never had a formal diagnosis. Post-pregnancy, everything was wonderful for a few years and I discovered what 'normal' periods are like. But as time has gone on, the bouts of pain and bloating, odd bleeding, hormonal headaches etc have steadily increased. The bladder pain and bloating are less on an alcohol-free, gluten-free diet, but still happen during my period. I am not poorly enough to feel the need to put myself under the knife, but I want to feel well again. I am normally a keen runner, but can't do a more than half an hour now. Is there any long term risk in not seeking a medical fix? What are the alternatives?

[Hidden]

I think diet and lifestyle changes can be very helpful but as a Stage 4 sufferer with bowel and bladder involvement I would say to seek medical advice/treatment too to hopefully avoid your endo getting worse or damaging organs xxx

[mariamamaria]

Hello. Try Visanne. It is the best till now. I am on Visanne since 2015 and it just takes the pain away. They are available in America, Greece, Belgium, Romania Bulgaria and Turkey. Speak with your doctor about this. Take care!!!

[mariamamaria]

I do have 4 grade endometriosis, bladder and rectal endometriosis. Believe me this Visanne just gave me back my life.

[Starry]

The risk is not knowing the location of the Endo and where it is growing.

I was very resistant to surgery initially as my symptoms weren't all that bad. It turns out I had severe recto vaginal Endo. It was burrowing into my bowel wall. If I had left it six months longer I would have needed a bowel resection. As it is I have lost 4 cm2 of my vagina which has been reconstructed. Endo can become dangerous if it is deep infiltrating and near vital organs. Some types are hormone resistant too. I would recommend an initial investigation and diagnostic lap so you know what you are dealing with. If it is affecting your physical stamina like that and worsening over a long period it's likely to be reasonably established or you might have adhesions. Diet can help by avoiding inflammatory foods eg dairy, gluten. But excision is unfortunately the most effective treatment in most cases.

[Fabbird]

Hi, the Mirena is a good option. It delivers a low dose of progesterone so is the safest hormone treatment long term. Although some women have a bad time with it, if you have had a child you are less likely to have a problem. After a lot of research, that was my choice rather than have surgery.

[Hidden]

I also had multiple surgeries after all drug treatments failed. Obviously whether or not you have surgery is entirely up to you, but I would say that the progression from pain that was bad but manageable to pain that was unbearable was very sudden for me - I literally went from pain I could cope with to pain that sent me to A&E for morphine overnight. There can also be long term damage caused by untreated endo - bowel problems, as have already been mentioned, and also kidney damage if it is growing on your ureters and they become blocked. You may also end up facing a far more extensive surgery than if it is treated now. I was diagnosed very late (at 38) by which time my disease had progressed so much that it took multiple surgeries to sort, the last of which was a hysterectomy with removal of tubes and ovaries, a bowel shave to cut out rectovaginal endometriosis, cystoscopy and stents to cut out the endo on my ureter, and a bladder shave. If it had been treated sooner I might not have needed such major surgery.

[Lou7707]

Dear Leo78

In the first instance, it might be worth seeking a formal diagnosis. You will then be able to discuss treatment options with a doctor.

In the meantime, here is our treatment pack. It lists all sorts of treatments ranging from pain management to nutrition to complementary therapies. You may find something here which works for you to help to relieve some of your symptoms. If you would like to talk it through with someone we have a team of volunteers on our helpline who would be happy to have a chat.

endometriosis-uk.org/sites/...

endometriosis-uk.org/helpline

All the best

Louise

Endometriosis UK