Something's happening but I don't know what...

[Lotus2660]

Urgh…I feel rubbish today.

My symptoms are becoming more prominent so I can get a better handle on describing what I get each month…

Each month (without fail, I might add) I get a sharp pain in my tummy near my navel and at the same time this pain shoots into my right wrist. It’s brief in duration but it catches me out and it’s extremely painful. Today it happened and the pain was enough to make me burst into tears.

I get pain in my ribs (mostly left side)

I get nauseous – from the pain in my left groin/hip/thigh mainly.

And the left groin/hip/thigh pain – it’s like I’ve got elastic bands continuously snapping against my thigh. Strange description, but that’s what it feels like. Almost like I’ve got elastic bands constantly going ping, ping, ping against my thigh.

Moving the leg makes it worse. When I do nothing it carries on.

Cheers

xx

[jojo777]

Hi

I feel for you. Do you have any surgery planned soon? Or are you on any hormone treatment at all?

My pain is manily in my right groin/hip/thigh, but its constant, dull and sharp at the same time.

I have to make my decision to have my second lap very soon, they told me its totally up to me when it will be done. I'm trying to pretend that I'm not in pain so I can avoid surgery again...but its impossible!

I'm full time at work at the moment and its so bad and sad to look all right and inside to be in severe pain!

Hope you feel better soon

Jo x

[Lotus2660]

Hiya thanks for reply.

Unfortunately my doc hasn’t exactly said it’s endo so nothing definite is being done. I’m not taking any hormonal replacements for it or having an op but it’s frustrating how nothing’s being done.

However, she has asked me to keep a symptom diary going for two months. What she has said is that because the pain is cyclical, it could be from what she has described as “inflammation” and that the said inflammation is building up in my pelvis/abdomen and causing sciatic symptoms – that the inflammation is pressing on my spine and causing numbness/pain/weakness down my hip/groin/thigh.

Looking this up it could well be sciatic endometriosis as my left leg goes completely numb and painful (it hurts to lift or move it with even the most minimal effort).

At first I didn’t even think it was anything to do with my cycles, as they’ve been fairly regular apart from the last one, which was a week late. Plus I had an operation on my right hip for severe tendonitis last year and I started to worry that the same thing was happening all over again!

However the pain isn’t the same type of sensation or intensity, and the pain I get now isn’t provoked by anything I know of – it just happens unfortunately. So that was what prompted me to see the doc.

The doc has said for me to go back and see her if the pain is bothersome but if it’s affecting my ability to move my leg or even lift it, then I should really go back.

I can empathise completely with you – I work full time and it’s very hard to explain to people I work with what I have and how it affects me. I even took my own hot water bottle into work with me mainly for the pain relief! I don’t even know how I manage to get up in the mornings – the pain I get depresses me and where I work is mainly all stairs. When I had the pain I had to hop on one leg to get up them. I felt so embarrassed about doing that!

On the outside I don’t look unwell. I last went to a nurse practitioner and she noted that I looked pale and tired – but that’s something no one else says to me! I can only assume that she’s a professional and she knew what to look out for. She firmly believes something related to my cycles/periods is affecting my leg as does my doc so it’s reassuring to know that some people I’ve seen suspect that I’m not as well as everyone who knows me assumes.

Does your pain go away by itself or is it always there even when you’re not on your cycle? Mine seems to last for five days and then resolves by itself.

[jojo777]

The pain I have can be with me for days and its not only when I'm on or before my period. The intesity of the pain though fluctuates and this has to do with my cycle eg I'm now in my ovulation days and its really bad.

I have endo in my right uterosacral ligament (right groin, lower right abdominal area). No one believed me in the beginning and after my last op the truth was revealed that I have endo.

The pain starts mainly in the groin area and sometimes its like it "traps" my hip or other days my thigh, or both!!! :/

It has always to do with which nerves are trapped in endo tissue or which nerves are affected in the area.

Is this doctor of yours a gynae? If not (or even if she is) I would recommend you see and endo specialist gynae, cause it might be endo.

I can understand that because of your previous problems with your leg you might have something similar again, but the only way to find out is to seek another opinion. Just make sure you go to a very good doctor.

Jo xx

[Lotus2660]

Hi

What you’ve got sounds really painful. Has it ever gotten to the stage where you’ve had to take time off work for it? On a few occasions I’ve felt like taking time off but I’ve done what I’ve always been used to doing which is to keep going. Silly thing to do I know…

Unfortunately I’m not sure about what my doc is exactly. I don’t think she is a gynae but I can only assume I’ll be sent on to them all things considered with what’s going on…

I’ve had so many problems in the past – for a few months the same doc thought I had an overactive thyroid and after one normal blood test she ordered other nurses do think I have one even though my doc said afterwards everything came back normal. I did try and do my own investigational work on thyroid issues but no other medical people could really help me unless I went private.

Would I have to go private to see a good endo specialist? Did you see someone on the NHS or did you go private? I would go private if I had the money, which is why I’ve stuck with my doc and the NHS.

Thanks

xx

[Lotus2660]

Sorry one question that just occurred to me -- have you experienced any bleeding outside your normal period with endo? I went to the ladies' a few minutes ago and I saw blood on the tissue but my period isn't due for another couple of weeks.

Thanks

xx