Will it ever end : Hi I'm new in here... - Endometriosis UK

Endometriosis UK

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Will it ever end

Lilit49 profile image
7 Replies

Hi I'm new in here having only just found this site I'm 33 and have had endo since I was 14. After a lot of surgery and 2 ectopic pregnancies and loosing my fallopian tube it's been pretty tough. Late last year I was found to have psammoma bodies in my endometriosis which eventually led to me loosing my right ovary in April. Recently the pain on my right side has returned along with severe nerve pain in my back and a lot of lower abdominal swelling. As I have no children yet I'm starting to worry that eventually I'm going to need the big op due to all this does anyone have any similar symptoms since oophrectomy?

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Lilit49 profile image
Lilit49
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happyseal profile image
happyseal

Have you looked into other approaches instead of surgeries? I am 30 and I have been running away from surgeries because I want to have children eventually.

Lilit49 profile image
Lilit49 in reply tohappyseal

I managed 3 years surgery free and thought I was doing brilliantly then had to have 3 in 6 months at the end of last year I've now told my consultant unless it's life threatening I don't want more surgery but pain management is difficult for me as the give opiates and I can't work whilst on those

What do you use?

happyseal profile image
happyseal in reply toLilit49

I have changed different things in my diet and lifestyles because I do not want any surgery unless it is really li threatening. Besides diet I always have different herbal teas during the day, and I'm taking different supplements (vitamins and minerals to boost my imune system), evening primrose oil and agnus cactus for the pms and pains, and now I'm trying serraptese that is said to help. But for example, I have been having great results, but only because I wanted to try a cheaper agnus cactus to cut a bit on the supplement costs, I started having pains. I'd say is about consistency.

How did you manage to be surgery free for those 3years?

Lilit49 profile image
Lilit49

I had a lap they removed my right fallopian tube as it was so diseased and fitted the mirena and it seemed to work wonders jus slight cramps during ovulation and during my period that were managed with paracetamol then all of a sudden it came back with avengance endometriomas constantly growing on the ovary etc that's when they found the psammoma cells on my bladder just seems constant it really gets me down sat with a hot water bottle now :( have an appt on the 10th Nov but don't know if I'll make it that long x

Shelly92 profile image
Shelly92 in reply toLilit49

Hi Lili

Again

I'm sorry how long have you had the implant device

I don't know for sure but I do know my daughter had that and they' stopped her periods and ovulation

She pretty much pain free

It took about 6 months till all the bleeding stopped but it did

happyseal profile image
happyseal

Well natural approaches is always a great way to manage endometriosis and avoid surgeries. I have been reading some books, and some other ladies suggested different things here at healthunlocked. The books I would recommend are the Endometriosis: A Key to Healing And Fertility Through Nutrition by Dian Shepperson Mills..actually I thing it does have the essential stuffs we want to understand, it is very scientific and at the same time she had it and has a clinic so it's a good book. Has everything from diet, supplements, to surgeries, with different stories from other woman.

The interesting thing is that I got chance to read this book when I was housesitting and petsitting for someone, and wouldn't even imagine she had endometriosis since she's very energetic and have 3 kids. I read the book whilst I was housesitting for 2weeks and didn't actually talked with her about endometriosis, I was a bit shy about talking about it...but a lot of info I found in the book I had read just bits and pieces in different websites etc.

Shelly92 profile image
Shelly92

Hello Lili

I had to look up that word because I've never heard of that .

But from what it sounds like a cluster of cells in a tumor sounds like endo words to me

I am not sure like I said I have never heard it described that way.

If it's what I said I don't see no reason to be told medical words that are hard to understand .

You know like lawyers do.

10 pages of words that could have been simplified in a make sense paragraph .

Usually meant to confuse people .

But hey I am not an expert on that term .

Do you still have ovaries and uterus ?

Do you want a baby ?

If yes get down to an IVF clinic stat .

Then if you end up with that big operation

You at least may have your babies first

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