Chronic back, hip, leg pain. Sharp, twinge pain in right side of groin Could it be Endo?

[Lass3]

Hello everyone,

I am on a waiting list for a referral to a gynae but it doesn't look like that will happen any time soon. I am 30 years of age and for as long as I can remember I have suffered with back and hip pain and I have just learned to live with it though some days are harder than others. This can be sciatic pain, 'growing pain' aches in legs or throbbing legs and hips. It can be isolated to one area or it can throb and ache moving around or come and go. I also would notice pelvic pain, outwith of my period and battled fatigue a lot throughout my 20s up to present day.

Last May, I noticed a sharp pain/twinge in my right groin/ovary and was suffering with severe bloating (I looked about 6 months pregnant). My period was also about 9 days late so I went to the doctor and he referred me for an ultrasound thinking it could be an ovarian cyst. My period eventually came but this ovary pain continued coming and going - worse around ovulation but mostly it just there all the time. The pain can be isolated to my ovary or can travel up my waist and also be around my belly button though always predominately on right side, really sharp at times and it is also tender to touch. I notice it when I move or stand up quickly, I'll have to stop and wait for it to subside. A lot of my symptoms point to appendicitis but it can't be this as it has been nearly a year of this pain!

I'm also noticing that I am suffering more with bloating/stomach issues and tranquillising fatigue that can floor me and make it impossible to get through the day and can impact my work and life. Sometimes during episodes of pain and fatigue, brain fog, it feels like an onset of a flu or bad cold, but it never turns into this.

My Ultrasound was clear but the sonographer (who was so great) said she couldn't rule out endometriosis and to go back to my doctor. Endo had popped up a few times when I was searching my symptoms but I didn't feel I consistently fit into the typical endo symptoms of heavy and painful periods. However, the occasional period can be extremely painful and heavy but not every one.

It was only when I found out two of my aunties have endometriosis that I looked further into endo as it can run in families. I started to see that hip/back pain, leg pain, ovulation pain, bloating and fatigue as a symptom. Does what I have described, resonate with anyone else's experience? I feel it will be ages before I get any definite answers as the waiting list is so long. Or maybe I just get severe ovulation/PMS symptoms? Or something else like chronic fatigue/fibromalgia?

Thank you in advance!

[Purple_Badgers]

Hi! What you describe sounds very like endometriosis to me. I have never had heavy periods, but they were always painful, affected my back and legs, gave me lots of fatigue and a cold/flu-like feeling. My endometriosis gave me terrible constipation, random stabbing pains, vomiting for 2 days at the start of every period, increasing indigestion of all sorts etc, until years later I had emergency surgery for suspected appendicitis. My appendix was badly affected and had to be removed, but the actual cause was complete blockage of the bowel by deep infiltrating endometriosis. I will emphasise that this is pretty rare, but it is an example of endo building over many years to cause an extreme problem, even without the symptom of heavy periods.Also, it’s important to note that you could have another illness, as there are all sorts that are quite common to have alongside endo (as you will no doubt find by reading more stories on here!)

I hope they can get you in for scans and examinations ASAP with a gynaecologist who has special interest or extra training in endometriosis. x

[Lass3 in reply to Purple_Badgers]

Thank you so much for replying! So sorry to hear of your struggles, it is just awful how long we have to wait to be just taken seriously. Yesterday when I posted this I was glued to my bed with fatigue and pain, today I managed a 35km cycle. The ups and downs of this is just awful. I'm speaking with my GP on Friday and going to really push my case. Thank you again.

[usernames123]

Hi there, your symptoms are so so similar to mine. I am currently undergoing tests and awaiting a gynaecologist who might take me seriously.

I have suffered with terrible pack pain for years, but as I was on the mini pill & didn’t have periods, endo never flagged up until 3 months ago when I came off the pill. I’ve had a horrific time with ovarian pain, and bloating since. Although my periods are generally light.

I have been tested for rheumatoid arthritis, and the pain clinic have suggested it may be fibromyalgia but I am not convinced.

The pain was so bad last week during my period I ended up in a&e and spent 3 nights in hospital only for all my MRI & scans to appear ‘normal’ apart from an ovarian cysts on my right ovary.

What’s really difficult, and I don’t know if it’s the same for you, is seeing all these different departments but they don’t seem to discuss the symptoms as a whole or talk to one another! Keep telling me my pain in my abdomen isn’t related to my back & pelvis pain etc!

I’m now prescribed morphine and have a review with the consultant next week so fingers crossed.

I would just really recommend you keep pushing & don’t let them fob you off.

We shouldn’t have to be in pain!

[Lass3 in reply to usernames123]

Thank you so much for replying! So sorry to hear of your struggles, it is just awful how long we have to wait to be just taken seriously. It is interesting you have been tested for rheumatoid arthritis, I have often though my pain could be arthritis but I think i got bloods for this when I was younger. However, my auntie who has endo, also has rheumatoid arthritis so who knows how much these symptoms that they look at individually are connected. Yes I agree, I have been to my GP about various symptoms but it has been me who has gone back and said could they all be connected and now i'm waiting a referral. I'm speaking to her again and might ask for stronger pain killers when I have flares. I hope you get answers soon and the necessary care you deserve! Thank you again.

[usernames123 in reply to Lass3]

Fingers crossed you get some answers soon, so keep us updated on how you get on!

[BloomingMarvellous]

Pretty much sounds like my experience. Just ask for endo referral and MRI ( not ultrasound) of pelvis. Don’t get fobbed off until it’s properly diagnosed. If you don’t keep asking, ringing direct, writing and making a noise it won’t progress. Don’t wait. I did and it’s cost a lifetime of utter misery.

[Lass3 in reply to BloomingMarvellous]

THank you for your reply. I am going to suggest an MRI to my GP. I did have an MRI when I was a teenager for my hip pain, but I have no idea what they looked for, they just told me it was clear. I will keep pushing. Thank you!

[Tillyfloss]

Hi. What you are describing sounds very familiar especially the back and hip pain ( I used to describe it as if something was being screwed into my hip very slowly, it was awful). It was a very long process but it turned out I had stage 4 deep infiltrated endometriosis, a full frozen pelvis and my bladder and bowel encased in endometriosis along with a 10 cm chocolate cyst that kept slow rupturing to add to the rest of the mess. I got sorted and am mostly pain free theses days but it was a slog to get there. I found the endometriosis diet and a good pain plan ( the pain clinic were fabulous) helped during the worst of it and a belief that I shouldn’t have been in so much pain and it was not normal or in my head. Xx

[Lass3]

Thank you for your reply. I am so sorry to hear of your struggles. Yep that hip pain sounds familiar. I have looked into changing my diet and I do some exercises to ease the pain already. I can just be really hard on myself when on some days I can't do that much. It is so hard thinking this is all in my head. Yesterday I couldn't concentrate and could hardly hold my head up and today, I was able to go cycling and that makes question myself 'was I really that bad yesterday?' Thanks again for your reply.

[BloomingMarvellous]

I found Omega 3 worked wonders for my hip pain and general inflammation.