Hi I've got stage 4 Endo and over last 6 months have developed some radiating pains down my legs when it's that time of the month. After lots of research I have realised this is a common problem. However over last couple of months I have started to get this (but not as bad) on and off when I'm not on my period and also this weird aching feeling in my arms and hands. Does anyone else get this?
I'm really starting to get down about it all again now especially as I seem to be constantly bloated too! Had to start wearing maternity trousers at work which is a major kick in the teeth when your infertile!!! Really had enough now
Written by
nat_nat_2000
To view profiles and participate in discussions please or .
Hiya, I can relate to your post; six weeks ago I was in so much pain everywhere but mostly in my legs, arms, I was bloated and wearing maternity dresses, because nothing else would fit for work (of what hrs I could do) and everyday as well. I know what your going through. What I'm going to say next is not for everyone, but I have a hysterectomy five weeks ago, I have no, pain in my legs or arms, general pain has reduced to level 2 from level 9/10. I have also dropped two dress sizes. The bloating can be a problem still if I do not watch what I'm eating, so I have decided to eat 80%clean and 20% none clean living. What I mean by that 20%, if I'm out with my husband we are not going to spend hrs looking for gluten free eater.
I have a number of long term conditions and level4 Endo diagnosed in January 2014. The hysterectomy was my decision, I know my Endo is not gone for ever, however there is a 20%chance of it returning as some point.
I have endometriosis I went to a pain management doctor. I have gabapenton, ultram, and zanaflex. It helps with what you are talking about and pain, and gets the inflation down
Im 43, I have endo and adeno. Since April 2014 I have had unbearable leg pain (down right and less so down left). At its worst I was admitted to A &E and can only describe the pain as hot ball bearings racing up and down the leg. It has taken over 5 weeks to get this pain under control. I've missed work because of it and it made me quite depressed. Anyway I'm now taking Acupan, provera and amitrytiptline at night with Ibrofen. If the pain is not getting knocked on the head I top all of this up with paracetamol. I don't like taking this amount of painkillers but it's the only way to carry in as normal as possible. I feel much better now these are all in my system. My memory and thinking processes are a quite foggy. I'm eating clean as going to the loo is painful! Sorry tmi!
On August 18th I'm having a hysterectomy and dare I say I'm looking forward to it in the sense of it's my only hope of reclaiming my life and getting off these toxic painkillers and getting fit and healthy once more. I'd like to think I can get my career back on track and start physical exercise again.
Sorry to hear you're struggling as well, you are not alone. Hope this helps in some way...(try Acupan for pain if poss it is a non opiate painkiller and I know another endo sister who is on it and it's helping keel pain under control)
I have had the pain you are talking about for year: always (since age 13) during my period and then for increasing amounts of time before it. I now have one week each month when I don't notice it. It did reduce in duration after my lap 2 years ago, but is now worse than ever.
It spirals down my legs ending most intensely in my ankles and the arches of my feet. In my arms it is only really in my wrists, and hands.
Over the years I have been told this is entirely imaginary. I don't think my imagination is quite this good! Sorry you suffer from it too, but it is good to know that it is a 'thing' and makes me more confident about raising it with yet another new doctor on Wednesday.
It's so nice to know that I'm not imaging all this. Everyday I seem to be getting new aches and pains. The abdo and leg pain was obvious that was due to Endo but when I started getting it in my arms I thought I was going mad. I'm still trying figure out if it is caused by Endo directly or indirectly. In the sense of has it started affecting nerves or is it how I'm lying in bed because of the abdo discomfort
I just googled 'bloating stomach and leg pain' and found your site.
I was diagnosed with endo 22 years ago when I went off the pill and tried to fall pregnant.
I didn't have a single period for over a year. I've had several laps to burn it out but I had large 'varicose ' type veins around my uterus he said like I had had 10 ten pound babies. So it all couldn't be removed.
My periods came very late in life. I was a couple of weeks off 16 when I got my first period which left me on the floor in foetal position and bleeding heavily for 9 weeks.
I am now 46. I have 2 fertility children even though Dr Molloy said that I had very little chance of falling.
I had a full hysterectomy at 30, including both my ovaries as I had PCOD and was only 55 kgs or less my entire adult life. I wanted everything removed that could be adding to my pain.
I woke up feeling better than I had my entire life😉
I lived an extemely active life. Going to the gym everyday. Riding horses. Snow skiing and snow boarding. Raising two children with severe reflux basically alone.
Having the hysterectomy bought me 10 brilliant years but the symptoms and pain got worse every year.
Now I am 46 and on so much medication including immunosuppressant therapy.
I am basically bedridden.
I have 2 degrees but had to give up work 15 years ago because of the pain and bloating. I would start out my day as a size 8 - 10 and end up bigger than 9 months pregnant.
I am so horrified to know that there are so many other women out there living this nightmare.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.