Does anyone have pain at the top of there legs.

[Rosie93]

Hi Ladies, I have had endo since i was 15 and now im 19 i have had two surgeries since then and my left tube is blocked and there is nothing my gynecology can do for this and i have just recently come off the depo injection and now im having huge amount of pain at the top of my legs, (mainly left one) and my left side of my stomach too. does anyone else suffer from this as well as me.

[Katt]

Hi

I have a lot of aches and stabbing pains in my groin and top of my legs. It often radiates down them, particularly when my ovaries are playing up mid cycle.

I was told by a specialist that this could certainly be a symptom of endo. I've not really found much to get rid of it yet - Sorry!

Hope you are doin ok x

[Hidden]

Hi

I know it sounds harsh but I have just started cycling and it seems to help. Not sure if it just takes your mind of it or it actually works. I am currently waiting for an appointment for a hysterectomy and I have been told that exercise does help. So I am going to keep it up!!

Hope you start to feel better soon xx

[chrissy39]

Hello

Exercise is known to help.

I've had endo for donkeys years but even though i've had hysterectomy etc. and consequently a lot more pain free i still have IBS and have pain sometimes in legs from that; So maybe severe abdominal pain from other illness as well as endo causes pain in legs.

Not sure any of that helps you but exercise - even light exercise will help.

[stevieflp]

Hello Ladies,

Sorry you are suffering such pain.

I have so far not had the leg pain you described but I did have the groin pain. This was due to recto/vaginal endo (often referred to as pouch of douglas as it is in the space between).

Hysterectomy only helps with endo caused by endo of the uterus. An oophrectomy is often recommended on the basis that it will put you into early menopause and the depletion of eostrogen will curtail growth of endo. Not always the case sadly. Particularly if you need add back hrt for memopausal symptoms - as ladies find out on menopausal drugs. In rare circs endo can also create its own eostrogen.

Endo can also be found on/around the ovaries, bowel (which is so many ladies get diagnosed with IBS, although symptoms of this at eriod time can also be caused simply by hormonal change so not always endo), bladder, sacral ligaments, pouch of douglas, rarely diaphragm and other rare places so hyster is not a total solution in itself in these circumstances where it is not confined to the uterus. Hence some ladies are surprised to find they still have symptoms.

It will be up to your consultant to make the diagnosis of where your endo is and what the most appropriate treatment will be.

I had a total radical excision surgery as mine was spread throughout the abdominal cavity and a hyster would not have sorted it out. I even managed to avoid having a hyster or losing my ovaries with this procedure as the surgeon was skilled enough to save my ovaries (resectioned to remove endometrioma and temporary suspension of ovaries so they did not re-adhere/cause adhesions whilst healing) and have been pain free for 16 months so far with my own hormones stil intact and no signs of endo pain. This procedure removes the lining of the peritoneum and there for seen and unseen endo. It heals much cleaner than with patch excision and so you are not at such risk of adhesions forming apparently. It is deeper than laser and so removes the root of endo as well as what is on the surface.

Make sure you look into all of the options available and to the experience of your consultant. Sometimes, the treatment you get offered can be limited by this. Unfortunately there are not enough "endo specialist consultant surgeons" to go around and gynaes are often jack of all subjects but not specialising in endo surgery in particular. I do hope you receive the treatment that is best for you and wishing you well. This is such a nasty condition and you deserve all the support in dealing with it.

Best wishes

[Vegas]

Stevieflp - can I ask who your surgeon was? Had 4 surgeries and my case sound similar to yours. Basically endo everywhere you mentioned as well as bladder and bowel. Trying to find a new specialist at the moment as my symptoms are worse than ever. Many thanks xx

[stevieflp]

Sure - it was the best thing I ever did after much turmoil at the various treatment options by a general gynae who advertised as treating endo but really hysterectomies were their specialism - was also offered what I see as chemical castration (i.e. drug induced menopause) and later admitted to not doing much excison surgery when I said that was the way I wanted to go. You have to be careful the options you are given are not limited by their particular experience!

My surgeon was Ashwini Trehan. I come from London but had to travel up to Yorkshire to see him. If you type in A K Trehan, his website will come up. This is very informative and it just hit me as being the most advanced and best long term solution. He is totally dedicated to endo surgery as is his wonderful team. I could not see any point in messing around with drugs that are only short term - I was after something more lasting and with less side effects than that.

The surgery was nowhere near as bad as it sounds and not too much more uncomfortable than a usual lap. He is an expert at keyhole surgery and I was far less bruised, despite the extensive surgery, than when my gynae performed a simple investigatory lap! I was out for 7.5 hours and the most difficult thing for me was getting rid of the anaesthetic effects as I generally don't suffer anaesthetics too well.

His audits evidence that this kind of surgery generally has a high non-recurrence for the past 10 year period of the audits which to me was what I was seeking and so far, I have been endo pain free, no painkillers apart from a paracetamol for usual prostaglandin type period aches, back to regular gym and no time off work - life as we knew it before endo. People say to me how are you I heard you were unwell and I have to stop and think if I have had a bug recently as I tend to now forget I was so ill.

How long it will last is not guaranteed as the reasons why we get endo in the first place, and how quick it manifests are obviously individual. Every month is an incredible bonus.

I would do this op again if ever I get a whiff of it coming back.

All best wishes

Feel free to email me if you wish

Fran

[tinker241]

having the top leg pains and it is on the thigh and it is part of the Endo which i have been told by the Endo Nurse and it horrible and it feels like that i cant walk far and lack of energy and it does do my head in!!

[isax]

Hi Rosie,

sorry to hear about your pains. i have suffered from left leg and groin pains too since i can remember and i will definitely say this is endo related.

But since a few months i have pains (sharp stabbing pains, throbbing and tremors) in both my legs allover from hip down to knees and feet.

My joints are very achy too i feel as if my heart is beating into them and this gives me these throbbing pains.

My legs feel so heavy that some mornings i can hardly move them. Two weeks ago when i woke up, i actually thought i was paralysed from waist down and this SCARED me so much!

anybody getting those symptoms in their joints too? It would help me to know if others do as i m getting really worried now.

thanks in advance and all the best to you all

isabelle x

[BexC]

I suffer pain in the top of my legs often and it is a constant dull ache and I also get sharp pains too. I havent found anything that takes this away but like most of the answers some excercise does seem to help. Sorry that it is not much help, but i think it is very common around your cycle. X X