Endometriosis UK
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Feel Like I'm Going Through Hell Again

I was diagnosed with endometriosis last year. I also had petit mal epilepsy which though was annoying didn’t cause me a great deal of distress but it wasn’t safe for me to go out on my own in case I had a seizure. Anyway, rightly or wrongly it was decided to deal with the epilepsy issue first and I had the part of the brain that was causing it removed in early September 2012. Unfortunately, during the operation I had a stroke which caused weakness in my left limbs leaving me unable to walk. (I can just about type this). I stayed in hospital for 4 months with rehabilitation which was very good and my walking improved enough for me leave just before Christmas.

Before I went into hospital my periods were erratic and during my stay they stopped with occasional spotting. I was in agony most of the time with period pain but no bleeding.

Now that I am home, I want to work on improving my muscle strength with the Physiotherapists who visit but have to turn them away because I am too tired most of the time as now I seem to be bleeding every other day. I also have constant all-over-body itchiness which blood tests have shown are due to low iron levels. This is driving me mad and keeping me awake at night.

I have been put on Zoladex and have had 2 courses so far but haven’t felt any benefit as yet. I am also supposed to be having a hysterectomy but the Gynaecologist wants to check with the Neurosurgeon that it would be safe for me to have another operation so soon after my last one. As I am sure you can imagine, I am not too keen on operations but feel as if I am going through hell. It’s like having PMS all the time. I was not fortunate to have had any children (I’ve had two miscarriages) and while I was in hospital I was constantly being asked if I had any children. With all the pain I was in it upset me very much. Of course at my age it would be too risky to get pregnant so I have had to come to terms with never being a mother or grandmother. This pain and fatigue is really getting me down and it is affecting my husband as I am so down and moody most of the time. This endometriosis is like ‘rubbing salt into the wound’

4 Replies

Talk about kicking you when you're down! You've been through hell physically and emotionally and every single lady on this site can empathise with that! Listen to your body and tackle one problem at a time. Iron tablets will quickly improve your iron levels and impove your fatigue. If the only thing you achieve in a day is getting out of bed then that is still an achievement. Keep talking to your husband. Men often feel that there is nothing they can physically do to solve the problem so give him practical things he can do to help.

Remember: you've been through hell before and survived, you can do it again.

Big hugs xx


The all over itchiness can also be due to the menopausal symptoms that you get with Zolandex. Try taking Livial to combat these symptoms. I sympathise with you so much; you're story is near identical to mine. Do you mind me asking how old you are and what pain relief they've given you? x


Just to make it clear I have NO intention of wanting to get pregnant at my age but this endometriosis is really rubbing it in.


Sorry Lucy I realised I didn't answer your questions. I had the itchiness before I was put on Zoladex.

I am 47 but as I said before I have no intention of trying get pregnant the risks are too great.

I have been put on Naproxen for the pain relief. I have also been put on an iron supplement. Not sure if any of these tablets are working yet.

Thanks for your reply.


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