Advise Please!!!: Hi, i have been diagnosed... - Endometriosis UK

Endometriosis UK

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Advise Please!!!

JenJen profile image
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Hi, i have been diagnosed with endo for 4 years now. i have had countless surgery and lost one of my Fallopian tubes. i am currently on the Depo injection which has worked well for 10 months but now im getting the same pains again. it feels like my body is having a period but i don't actually bleed!? im constantly exhausted and hormonal (my poor family!) has any one experienced this on the depo injection or do you know what else i can try?

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JenJen
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Zolta profile image
Zolta

Hi,

Sorry to hear you are in pain. I would visit your GP to discuss other treatment options. Maybe your body is getting used to depo injections and you need some alternate treatment - just my own theory. The contraceptive pill loestrin suppressed my endo for many years and looking back I think I had endo since I was 15 (am now 29) but was prescribed the pill to lessen my severe period pains as had to take days sick from school each month. I was diagnosed with endo last year when had a chocolate cyst in my right ovary drained through laparoscopy.

There are quite a few other options out there but I personally would not have the more invasive ones like the coil - just seems a bit extreme and unnatural to me to have something 'physical' in my body than chemical - even I didn't like the though of chemical so came off the pill and that is when problems really kicked off for me.

The pill suppressed my endo I think because I have/had endo mainly in my ovary and like you only have one fallopian tube, but this is because of a mullerian abnormality from birth: I only have the one ovary and tube as my uterus is unicornate. The one ovary I have was pumping out an egg every month when not on the pill so my ovary did not get a break so I think partly the reason why endo cells started to form inside the ovary as could not heal properly each month.

I went on Prostap for 3 months (1 injection a month). Made me temporarily menopausal but worth it as had no pain at all :D and it shrunk my endometriosis - so much improvement for me that I became pregnant New Year 2012! And that was a big achievement for me due to only having half a reproductive system :)

I hope you find a treatment that will help your endo like it helped mine.

Zolta.

JenJen profile image
JenJen

Wow Congratulations on getting pregnant- that is Amazing! thanks for your reply:) i have tried various "pills" and they work for a while but the pain is still there. this injection was like a god sent at first i had no pain at all!!

oh well keep smiling :)

Juleyanne profile image
Juleyanne

Yes like you have had various surgeries and lost both fallopian tubes which were damaged and full of scar tissue (adhesions). After tube removed things got better then pain began again, then I had laparoscopy and hysteroscopy which revealed extensive endo and adhesions glueing ovary to bowel and fallopian tube stump the other side to bowel which they lasered off or cut can't remember which. Anyway again after op huge relief then pain came back and after trying Zoladex injections and tibolone (synethic hrt) I had no relief. Gyne told me if Zoladex works (sending you into early menopause) then it is endo if it doesn't it is Adhesions sticking organs together causing pain.

Looks like mine is more adhesions. Adhesions can grow their own nerve supply apparently which gives you low back pain down to knee and interfere with bowels etc. Hysterectomy is next option as still got pain back reluctant in case adhesions form and make things worse. With each surgery adhesions can get worse (scar tissue) and that can alone cause pain. Everyone is different

and I am having ultrascan soon to check for Cysts. Keep going to GP and getting tests, tiresome I know but accept ultrasounds, MRI's, Laparoscopies, Hysteroscopies to track down the cause.

wdwfan1973 profile image
wdwfan1973

Hi there, just wanted to say I think the first poster may be on to something, maybe your body is getting used to the depo? I had depo injections for a year and I had no change in the pain at all. I was supposed to take them for 2 years but after a year I asked the nurse if it was going to help me wouldn't it have worked by now and she admitted yes, if it was going to work I'd have seen improvement around the 2nd injection so I didn't have any more. I'm now trying the Mirena coil, see if that does anything. Is it worth speaking to your GP about it, could they give you something else with it? Good luck xxx

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