Tired of it all!: Hi, this is my first time... - Endometriosis UK

Endometriosis UK

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Tired of it all!

L1SA profile image
L1SA
4 Replies

Hi, this is my first time, just joined. I am 35years old with two amazing grown up children. After a third pregnancy went wrong I went on depo provera injections every three months (periods stopped) but had to come off it after getting a pulmonary embolism. After a few months started to have terrible pains in my abdomen and groan. After going back and forth to docs and hospitality I opted to be sterilised and stop all contraception. But the last 2 years have been excruciating. I was diagnosed with endo which had been seen when I was sterilised but no one told me. I've since found out that the depo injection causes blood clots and can cause endo. Women are only supposed to stay on depo injection for 2 years, I was on it for 12. I'm at the lowest point I have ever been in my life. It's affecting my family, my relationship and my job. My boss (manchester city council) are dismissing me on medical grounds do I really don't know how much ore I can take. I'm in pain all of the time and during my monthly, I can't even explain. :(

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L1SA
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speacock36 profile image
speacock36

Hi L1SA, I'm so sorry to hear what your going through, I do not have endo but I can sympathise with the depo, I was on it for 9yrs until summer this year I ended up with dvt in calf caused by this contraception. For 12 weeks I had the most awful withdrawal symptoms, I work for the government and the time I took off wasn't a problem. I am also brca1 and going to have to take time off for ovary and fallopian removal beginning of the year. I think you need to seek some professional advice and hopefully someone can help you on here, it's a great site. Good luck.

givemeananswer profile image
givemeananswer

Hi L1SA,

Thank you for sharing your experience. It was suggested to me to try depo provera last summer but I always suffered greatly from birth control pills, stabbing pains in my chest, charlie horses in the middle of the night in my calves, depression, plus it never helped with the pain at that time of the month. I now have been told I have osteopenia and so don't think it would be a wise choice. Your post just confirmed that. I did see a specialist who has agreed to take a look with laporoscopy again since it's been11 years since my hysterectomy and all my symptoms just returned this last April. I think doctors think we are just whiners but I was actually pain free for a long period not bothering with doctors for a long time. I had an oversized womb, that was just explained to me two weeks ago. I hope this turns out to be endo in my cul de sac that is the cause again, god knows I don't need another ailment in this lifetime! Just wanted you to know your not alone and that your post helps us.

JuCeb profile image
JuCeb

Hi there, that all sounds pretty horrendous. Yes, unfortunately doctors don't always get it right. I was prescribed the combined pill to help with my periods, which also masked my endo, only to be told an amazing 13 years later that I should never have been on this due to the fact I suffer with migraines with aura thus was at a significantly increased risk of a stroke whilst having one!

Anyway, I work in HR so I'm assuming they've followed the correct procedures before reaching their decision to dismiss you? Endometriosis is an ongoing debilitating condition so in theory could be covered by the Disability Discrimination Act (sorry I can't be more specific but I'm currently living in Australia thus not completely up to date with UK law but maybe something to check).

It sounds like you need to get yourself a decent specialist and possibly explore the need for a laparoscopy to pinpoint exactly where the endo is and what can be done. There are other hormone treatments you could try to effectively put the endo to sleep i.e. the Mirena, progesterone pill, etc, just something to keep it quiet. I have also found taking something with ibuprofen in during the run up to my period helps with the cramping when it starts.

I do hope you are able to get yourself sorted soon x

I never heard of birth control CAUSING endo. I do hear that it masks it until the body can't hide the pain anymore. I have the same issues with estrogen based birth control (the pain, anger, depression, feeling like my lung and leg had a clot in it). I have been on the depo shot for nearly a year now. It was my last option for pain relief. It is failing miserably. I still hurt all the time, and now on top of that.....I bleed constantly. My Gyno says "that isn't suppose to happen". Well, duh! So now my only option for no kids for my part is to get my tube tied. But I want pain relief!! That was the only reason I even tried birth controls.

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