Leg pain

[Vickyyy_]

Hello!

I have stage 4 endometriosis (DIE) and I was just wondering if anyone gets this weird pain. The pain starts from the bum then shoots in to the thigh area and then down to my calf. It feels like a numb/ dull pain, I don't really know how to describe it. It usually goes on for hours ( can last a day or more). Sometimes it can be so bad that I can't even sit or stand.

I only had a diagnostic lap, so everything is still really bad in there. My left ovary is stuck to my bowel and etc... So I'm guessing it's something to do with that.

[Hayayaya]

Hi! Bless you. Wishing you the best!!

The shooting pain could possibly be sciatica, have you researched this?

Endo can cause sciatica and it shows sometimes in the way you’re describing. Would definitely recommend you to research further into this and mention it to your GP.

[Vickyyy_ in reply to Hayayaya]

Hi! Thank youuu, you too!

I haven't really looked into that yet, but I will do now. Thanks for the suggestion! I will try and discuss this with the GP as well.

[Freedomburrito in reply to Vickyyy_]

The pain I have had connected to menses is not sciatica.

[Rubarb1]

Hi Vicky!Yes im experiencing the same pain you have.

The only thing that helps me take the pain away for a while is to stretch very regularly.

If you search for sciatica stretch you can find loads of different ways to do it. Some might give you pain in the tummy so try and find one that works for you and do it every day.

For me the pigeon position works very well.

Hope this will help!

[Vickyyy_ in reply to Rubarb1]

Thank you for the suggestion, I will definitely look into this!

[Lily1986]

Hello.

I have stage 4 too and suffer with leg pain, electric shock, lightening bolt and numbness.

I’ve been told it is due to damage caused by the disease and surgery.

Also I can almost feel period cramping in my thighs too at any time of the month.

Best wishes for your future treatment I hope it provides some relief xxx

[Vickyyy_ in reply to Lily1986]

Hi!

Urghhh... this disease just loves to damage everything.

Thank you! You too! xxx

[Roobs33]

Heya,

I have stage 4 endo that was mostly treated (still on the bowel) via laparoscopy 6 moths ago.

I have been getting awful leg pain. It’s mainly in my right thigh, right bum cheek, lower back and in my pelvis. Weirdly I didn’t have it before the surgery. So I’m not sure if it’s because of the surgery itself or because the Endo on my bowel has gotten worse. I’m seeing my consultant in a couple of weeks so I’m going to ask.

I have found that yoga sometimes helps. It’s always a lots worse before, during and after my period for about a week.

Will you be having excision surgery soon? I hope that you find something that helps xx

[Vickyyy_ in reply to Roobs33]

Hi!

I usually have the same issue , but this time it was both side which was weird. I don't remember having this before surgery, but endo does get worse and worse the longer they leave it.

I'm hoping to have a date for my surgery soon, but I don't think that will happen anytime soon with all the backlog. I had my diagnostic lap in 2018 and have been waiting since then.

Thank you! Good luck! 😊xx

[Endo_Jaded]

Hi Vickyyy_

I am stage 4 with DIE of 10mm in bowel now, and exactly like you stuck to rectum, bowel, all together and POD is obliterated. Been waiting since 2017 for urgent surgery 😳🙄. Leg pain is exactly what my left side endometrioma causes, I say this as after my last endometrioma ruptured, I had leg relief for about a month and then it started again gradually. I have a new endometrioma now and the leg pain has been getting worse and more frequent over the time.

Sadly, Endo seems to affect our nerves shockingly and my doctors at least were absolutely useless when I was complaining- sending me for X-rays etc and dvt checks but never considering the endometriosis.

I find a gel called ketoprufen works (prescription) or a tube called Namman Muay cream really helps especially if you are wanting to limit pain relief tablets or need to sooth just that area. (Ps both work fab on lower back pains too)

[Vickyyy_ in reply to Endo_Jaded]

Hi!

Wow that's awful! It looks like we're in the same boat though because I have been waiting for a proper surgery since 2018 with all those issues that you mentioned. They just put me on the mini pill (Cerazette) to help with the pain, but it didn't really do anything. I still get all the pain.. maybe even worse now, but it did stop the heavy bleeding so that's the only plus.🤔

Yeah, there's always something new that you learn about this disease! I hope you can find a good doctor that will actually listen to you and treat you properly. I feel like most of the time they don't believe us when we talk about pain.

Thanks for the suggestions! I will definitely look into those because it's always good to have an alternative to pain relief tablets! 😊

Good luck and I hope you get seen soon!

[Endo_Jaded in reply to Vickyyy_]

Cannot believe this. I was put on cerezette (Cerelle) as well. Did nothing but make my moods horrid. Came off it last year and boy did I hate it, pain was twice as bad and my daily is about a 5-6 on cerezette.

I avoided Lupron (prostap), mainly due to my research for my dissertation in medical law and the stuff I came across would scare you. But I caved and request synarel (not because I wanted to or I advocate for it) due to the crippling pain, lack of health support and to gain some semblance of life back. I have been on it for 5 months, I’m allowed to continue with it and HRT (usually 6 month intervals, but doctors have the MD for a reason 😂) I would say it’s helped, about 25-30% which is better than zero. Synarel is a nasal spray you use with HRT but the best bit of it is you can stop it immediately if it doesn’t agree with you.

I’m so sorry that you like myself have been left to suffer.

You are more than welcome to join my signal app Endo group. We are about 6-8 girls all with endo and or other issues and we support each other. We have people from Scotland, England, Northern Ireland (Hi) and Ireland oh and Philadelphia too 😂 can’t for get are resident American :).

If you’d think you’d like to be a part of it for advice, support, whining, ranting or just natter drop me a DM and I can send you the link to the group. All you have to do is download signal on to your phone.

(That applies to any Endo warrior that would like to be a member of a private group ) xx

[Freedomburrito]

Yup, I used to get that pain ALOT! Usually at work, while bartending..

[Ioanaap]

hi, i had the same problem for a long time and it has become unbearable. i recently had a laprascopy where they found endo had extended to my bowel, close to the rectum. that may explain the type of pain...