Hi everyone! This is my first ever post and I'm really hoping to find some other people who might be sharing the same experience as me.
I've been struggling with endometriosis symptoms for about 7 years and was only just diagnosed this month (yay!). The thing is I have so many questions and I have no idea who to talk to. I'm 21 and don't really have anyone to talk to about how much I'm struggling so I'm feeling quite lonely.
At the moment my biggest question is to do with leg pain. Over the past few months I've started to experience awful leg pains like cramping all across my thighs and shooting pains down my legs into my ankles. It's probably the worst symptom of them all because it's starting to affect my mobility too. Walking is really difficult and painful. Standing up for more than 5 minutes flares up my symptoms. It's a constant battle. I don't know what to do because I'm losing my ability to basically move. Does anyone else experience this? How do you combat this?
Also, I've been kind of exploring the use of mobility aids but I just feel so unsure about them. I feel like I'm not allowed one because of my age. I know people are going to judge me but is it worth it? Is it even going to help? If anyone uses a walking stick or aid please let me know. Any kind of words or wisdom would be massively appreciated.
Looking for a friend <3
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PastaGirl13
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The pain is in both legs. I don't think I have an endometrioma because the MRI I had didn't show anything like that. I do have endometriosis thickening on my uterosacral ligament. The pain kind of starts up in the hips and radiates down and it gets worse when I walk/stand. I hope that kind of makes sense!
I had an endometrioma which pressed into the nerves in my back as it got bigger and gradually the pain got so bad I couldn't walk. I used a walking stick (and had people laugh at me because I don't look old enough for that kind of thing) but I needed it to move for a number of months. You may have something similar where the endometriosis is pressing on nerves. Also, does your pain come and go depending on the time of the month?
You might want to look into possible dietary changes that might help (cutting out meat, alcohol, gluten, etc. - not all but something might be making things difficult for you) and also possible gentle exercises or stretches that make things easier for you, although maybe a doctor's advice would be helpful for that. Don't worry if you need mobility aids; if you need them, you them.
I realise you've just been diagnosed but has there been any talk of removing the endometriosis yet?
The pain is pretty much constant depending on how much I move around that day. I think I might bring that up with my doctor, thank you!
I definitely need to explore some dietary changes too you're spot on with that haha. I've been talking about food triggers with my doctor too because that is another thing that is making my symptoms worse so yes you're definitely right there.
My gynaecologist has referred me to an endometriosis specialist to discuss surgery options so it's on the cards but the wait to be seen is at least 6 months.
Thank you for all your help it means a lot to me x
My pain sounds very diferrent to yours but I just wanted to say, you are totally allowed to try out using a walking aid of some kind! Just try it, see if it helps, and if it does, that's great! And if it doesn't, that's fine too! There's no shame in using a walking aid. <3
Thank you so much for your encouragement, it really does mean a lot to hear. I know it sounds kind of silly but I didn't really consider that worst case scenario it doesn't help and I can just stop using it! Also, for some context, I think the main reason I feel like I'm 'not allowed' to use a walking aid is because one of my family members is a wheelchair user. Her disability is very visible and she cannot walk so I feel like because her disability is more severe than mine it's had a huge impact on how I view my health. I'm so used to being a carer I'm finding hard to come to terms with the fact I need to be cared for now. Again, thank you for your comment, it means a lot to me x
Hello, I’ve recently had an Endometriosis diagnosis via MRI and confirmed on laparoscopy. After also 7/8 years of suffering without answers. I’m now six weeks post my first op. My BSGE specialist has removed extensive endo from my pelvic walls and both uterosacral ligaments. As well detaching stuck together organs.
My day to day pain prior, was mostly lower back pain, pain deep in pelvis which radiated down both legs to ankle also. When really bad, I am unable to stand and walk. It was also triggered by exercise/walking. I’m sorry you’re experiencing this is, especially so young! Im 33 and really mentally struggle with feeling like my mobility is that of someone much much older than that, it is awful!
Painkillers/hot water bottles and ridiculously hot baths are my best friend, resting when pain is bad also, mostly as there’s no other choice. I have never tried with a mobility aid, but it absolutely can’t hurt. Don’t worry about the opinions/judgement of others, if it helps - you’ve got to do what’s best for you!
Our symptoms sound similar, if I can help in anyway just let me know xx
Hi, it definitely sounds like we've had a similar experience there! It's such a strange experience to feel like your body is so weak when it should be strong. I'm still trying to wrap my head around that.
If you don't mind me asking, how did the op affect your pain and mobility? Did it have a big impact or did it just kind of reduce symptoms. I'm still trying to figure out if surgery is right for me right now so would love to hear more about your experience if you are happy to share, no pressure of course!
Hi, don’t mind sharing at all. To date it’s been very up and down. I also have Adenomyosis so was unsure if pain is due to Endo or this.
I agreed to surgery as I had other symptoms (severe pain during intimacy/smear/constant bleeding) which I felt were impacting my day to day life so heavily, I was desperate to try anything as contraceptives have not helped.
The expected pain during recovery was manageable with the meds given, it felt completely different than pain I’d experienced previously however, I’ve also had a number of bouts that felt like before, which included lower back and down the legs. It’s sadly sometimes been more severe than it was before surgery. Which is terrifying! Currently I have some good days and some bad but I’m trying to remember that recovery isn’t linear. My consultant has said it can take months to settle/see the benefit therefore, I’m just trying to rest and not push myself by doing too much. This timeframe has been echoed by peoples experiences on here also which is a bit of a relief. But only time will tell.
I’ll absolutely keep you updated once more time has passed. Hoping to miraculously see some improvement soon! Xx
Thank you for sharing, it was really helpful to hear about your experience! I'm sorry the surgery wasn't able to do more for you but I'm really hoping with a bit of time you might get to see some better results. I can't imagine how hard it must be to go through the surgery for it to not have the results you might have hoped for. It's scary to take a leap of faith like that but there is definitely still hope that it could take away some of pain and I'm sending all my love!
Thank you, I’ve still got hope. I’m not very patient but I’m trying to learn! I think surgery is worth it for many but it absolutely is a personal decision based on how much you’re suffering. It’s a gamble like many things in life!
My pain isn't the same, but I just wanted to send support and hugs.However I do have thoracic endometriosis, which means I struggle with horrible chest pain and get terribly out of breath. It's quite debilitating.
I'm having to hire a disability scooter in Disneyland in 12 days, so I can keep up with everyone, including my daughter who is in a wheelchair.
I'm pretty embarrassed about it, but can see no other option.
Endometriosis is a very lonely condition I feel, and no-one can see our pain and emotional stress.
I myself feel certain close friends and family may be thinking I'm over exaggerating it , even though I've been diagnosed.😓
Hi, thank you for you message! Sending support and hugs right back to you as well!
It feels so wrong to have to use a mobility aid that I almost feel like I'm not allowed to even if I know I need help. It can feel so isolating I honestly just feel like none of my family or friends understand. They're so supportive but I don't know how to explain it to them better than I already have and I still feel like we're not on the same page. It's hard but finding community here is really really helping me.
It was a lot worse before I was diagnosed because how is anyone supposed to believe me when I would say I'm in pain every day and have no idea why! I think my age doesn't help that either. I used to have to call in sick to work because of it and they actually laughed at me for it because I was 20 so I should be 'healthy'. It's ridiculous but luckily I don't work there anymore!
Yes this group has been a godsend.People really haven't a clue about endometriosis and the pain it comes with. And yes it's a lonely condition to have.
Even some women have never heard of it I'm finding.
Hi, I get pain like you describe. I believe mine is because of nerve damage caused by surgery to remove endometriosis in the back of my pelvis including the uterosacral ligament area. I was warned about nerve damage prior to surgery so I'm not surprised by it and to be honest I showed signs of nerve issue before the surgery. I use a wheelchair at times for things like shopping or just going out for a walk because the pain is too bad. I use a cane when the place I'm going into isn't accessible or it's a short distance.
It is hard to start using an aid, I was helped by occupational health and honestly I'd be so lonely without the aids now. Start slow, start using them at home first and see what works for you. People will probably stare but they won't remember you after you've left their field of view try to keep that in your mind.
There is also no need to compare yourself to others although this can be hard, we all support you doing whatever and using whatever to help yourself live a fuller life.
I think we're probably experiencing a similar thing. I haven't had any surgeries yet because I'm quite worried about the possible damage but it is something I'm considering. Based off the way my gynaecologist explain my endometriosis I believe it could be affecting my nerves which would explain the leg pain.
Thank you for sharing your experience. I can feel myself becoming more and more isolated because of this pain and I think I need to seriously start considering an aid for this. The way I'm trying to think of it is I'd rather feel judged for using an aid than isolated from not using one.
I appreciate your support so much, I'm finding it hard to feel supported at the moment because I just don't think my family or friends understand and I don't know how to explain what I'm going through. Hearing that I'll always have support here really does make everything a little bit easier. Thank you x
Hey love, I have the same pain and weakness in the legs that you do - I had it bad before I had my surgery. For the 10 days before my period started it would get worse and I would feel pain all in my thighs and my calves would cramp like hell. I also had a general feeling of weakness and instability in my pelvis. I'm pretty active as I climb and hike and do yoga so it would really piss me off every month when all of a sudden my body would stop working!I had stage 4 that was excised via surgery this year, I had it all over everywhere and had a massive endometrioma removed. I have definitely found my leg pain to be much better since my surgery at the start of this year.
There is absolutely no reason for you to suffer without a mobility aid if it would unlock areas of your life! It's no-one else's business but yours. You could also get a really cool stick with go faster stripes on it lol
I'd also say that if you're on the wait list for surgery, then your doctor should be helping you with pain relief in the interim. For me, sitting for prolonged periods is the worst and makes mine flare up so I have to move around in the day by going for little walks and doing yoga. Currently in pain cos I've had loads of coursework so have been doing a lot more sitting! Gentle movement, keeping hydrated with electrolytes to stop cramping and heat helps me!
Hi! Thank you for your response I feel like you've basically described exactly what I've been feeling with the leg pain. I think the only big difference is I tend to find that my pain gets worse from standing and moving so I spend a lot of time trying to find a seat haha. That being said small movement does help me as well so it's all about balance.
You're right, I keep trying to remind myself that I would never judge someone else for using an aid so why would I judge myself. I don't even care if other people judge me it's all in my own head. Hearing everyone's responses has really helped me with that and it's something that I hope I can explore soon.
I haven't had any pain help for a while. My doctor has kind of just put me on a waitlist and said that's that so I've booked in a new appointment with my GP instead. She's usually very very helpful so I'm hoping to get some more help from her.
Thank you for your kind words and support, sending love ❤️
I’m feeling exactly the same way. I feel like I’m trapped in my own body and it’s suffocating me. My anxiety makes me feel like a fraud using a walking stick even though my body really needs it.
Feel free to message me and maybe we could chat about it 🥰
Hi there, sounds like a challenging time for you.Endo pain is awful
I am a community therapist and your local free NHS outpatient physio service should be able to help with mobility assessment and aids assessment.
In my area if you Google AHP physio or musculoskeletal physio then it comes up with the right service.
You shouldn't be judged, not by a health care professional certainly, they will assess your need and offer support or advise on other services that can support
Thank you so much for your message. I have ended up having a GP appointment and they have now referred me for physio which is very good. I'm hoping they can give me some help so I can start work. I appreciate your advice x
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