I'm really worried: Expressing my concerns... - Endometriosis UK

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I'm really worried

JaneG79 profile image
5 Replies

Expressing my concerns

So about a month ago I saw my gyno and my Endo is still there but it's apparently not causing the horrible pain it's contributing but not causing it. Go Figure!

On Tuesday I'm having both a Colonoscopy( my second) and an endoscopy (throat one). I suffer terribly from ovulation pain on my left side, some months so bad like I'm currently experiencing that doctor not sure if it's a bladder/kidney infection or a colon infection after I ovulate.

This is why I'm tossed back and forth between the gastro and gyno guy.

I'm sick all the time now, I have an amazing husband and child but I feel like a broken record cause no one really gets how uncomfortable I am with the pain.

I'm terrified they will find something really wrong as this pain is excruciating at times.

The last time I had one in 06 I was single and now 9 yrs on I have a wonderful hubby and a gorgeous 1 yr old, I have everything I ever wanted. I just need to talk, I don't really have someone who will just listen to me vent over and over.

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JaneG79 profile image
JaneG79
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5 Replies
Tboag profile image
Tboag

Hi,, what is your back ground with the endo treatment. Have you had a lap and endo removal

What are your symptoms??

I've heard so many times that doctors say it can't be endo, but it turns out to be.

Keep fighting to get this pain diagnosed. Good luck

Xxx

JaneG79 profile image
JaneG79 in reply toTboag

I was diagnosed with Endo in 08 after they removed polyps near my appendix with a lap. I was fine until I had my daughter in March 14, three months after I gave birth is when the pain and discomfort around ovulation started again. I saw my gyno in Feb 15 and he wouldn't do another lap basically said its not the endo and once I have finished having all our children he would do a hysterectomy and that will solve all my issues( which is bull) so my Dr said we see if it's got anything to do with the gastro side of things. So on Tuesday I'm having a general to have a Colonoscopy and endoscopy.

My symptoms are server pain left side near ovary and kidney it wraps around to my back, I have pins and needles in my left leg, I have no energy always lethargic, loss of apatite, I'm basically always in pain- I live on pain med's. But I only get this pain ever time I ovulate on my left side never my right.

I've pushed and pushed to see new dr's this has been going on for 11 yrs and I feel like I only get a half diagnose.

Tboag profile image
Tboag in reply toJaneG79

If you get the all clear from Tuesdays scans, I would ask your doctor to be referred to an endo specialised, your gyne docs must have little experience with endo to say catagorically it has nothing to do with your already diagnosed endo, when you had your lap back in 2008 did the surgeon remove any endo and how and where from?? If you no that it may also help a little,

If you go to the bsge list of specialists see if there is one in your area, the NHs states that server endo should be dealt with by endo centre try to find this as a statement and take it with you to your doc, try endo uk website,

You need to be loaded with as much info as possible when you see your doc,

There is a lady on here Lindle, and she has written some very informative stuff, have a read, I think it says somewhere, where the NHs statement can be found too.

JaneG79 profile image
JaneG79

Yep, already 1 step ahead of you but I'm doing one specialist at a time.

Like I said above polyps/endo was removed in 08 around my appendix.

I don't live in the UK, I live in Australia and I have a list of specialist from the Endo Society of Australia. trust me when I say I'm an encyclopaedia on treatments pain med's all based on endo. I've been through the ringer with incorrect diagnoses and things so already know the ins and outs of my disease. I have 3 pages of notes for each dr. But thanks for the info

Bevsymon profile image
Bevsymon

The pain could be endo and adhesions Dr said my adhesions were very complicated and may have been cause of my pain even though I had severe endo x

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