Endometriosis UK
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Could it be just endo?

Evening all.

After reading a lot of posts I'm starting to think that I may be only suffering with serve endo and not fibromyalgia as well. I know I have arthritis but I've never believed I have fibro.

I've never had a lap and was only diagnosed with adeno last week this new gynea has said I prob do have endo, I'm going for hysterectomy on Tuesday and they have said they will have a good look round. I'm really worried that this isn't going to be the end of my troubles.

Has anyone else been diagnosed with fibro just to find out its endo?

Beccy x

6 Replies

I used to practice acupuncture and the physiotherapy side of Chinese Medicine. I had a patient come to me with diagnosed fibromyalgia so I did a lot of research. The medics can't tell you exactly what it is or what causes it. They diagnose partly by ruling out other things but also by pressing on a number of points around the body, if most are tender they say you have fibromyalgia. Guess what? All the points are significant acupuncture points. If part of the body needs treatment the acupuncture point needed to treat it will feel tender. So when you get that diagnosis, what the doctors are actually saying is that your body is suffering from pain and fatigue that they haven't found a cause for.

Whilst you haven't said precisely what your problems are, if they match with endometriosis then they probably are.

You'll find plenty of posts on here from women that suffered for years with endometriosis without it being diagnosed. I'm now in my 40's and seeing the specialist next week . I have been to several gynacologists presenting with typical symptoms of endo, inculding a burst cyst on a fallopian tube, fluid in a tube for years, extreme tiredness, headache and flu like symptoms during every period an ovulation time, and bowel problems for years. They have still failed to diagnose endometriosis. In fact one gynacologist said there was no way that my flu and headaches could in any way be connected to my gynacological problems. Another failed to realise that my womb being at the wrong angle to insert a mirena coil was due to endo. The level of incompetence out there is akin to calling a technician to find out why you TV isn't working and them failing to realise the fuse has gone in the plug.

You really need to see a specialist in endometriosis.There is a list somewhere on the endometriosis-uk site. With your hysterectomy due on Tuesday I'm not sure what you need to do. I can only suggest trying to phone one of the specialists first thing Monday and tell them you're due a hysterectomy next day and ask if it would be better cancelling it until you've seen an endo specialist.


Also there is a lot of new research linking endo to autoimmune diseases. This includes chronic fatigue syndrome, allergies and fibro as well as chronic immune diseases such as rheumatiod arthritis, lupus and ms. Great isn't it not!


Hi there

I was diagnosed with Endo at 28 and had my first oporotomy that year, I was then wrongly diagnosed with fibro at 39, cut a very long story short I had and have symptoms doc were not sure about so was referred to rheumatologist who diagnosed the fibro,

The symptoms were all down to my endo progressing and taking hold, I am 42 now and I don't have fibro I have endo.

L x

1 like

Thank you for your replys. My fibro symptoms are mainly muscle aches legs neck shoulders and back I do get joint pains as well. Also fatigue brain fog memory loss and visual disturbances.

I always doubted my diagnosis and have always believed I have a hormone imbalance.

When I told this new gynea about the fibro and how I believe its connected the my gynea problems he said it sounds like I more than likely have endo so he would have a look during my hysterectomy. I do have confidence in him.

Beccy x


If you have Endo you are more likely to get fibermylgia. I have both. Some days really bad. I stoped taking any thing wott aspatame unit .its a man made sugar. Not taking this stuff has helped me a lot


Hi, I had both Adeno and endo, i had a lap in April to confirm and remove endo and just 12 weeks ago had a hysterectomy to cure the adeno, and ive recovered well from the op, and my pain levels have decreased, but I still have similar pains from before op, and my gyne said he would remove any endo found, i don't beleive he has done a very good job with the endo, so I'm now having to get refered to a gsbe specialist for them to check out my endo, AGAIN,

Is your surgeon on the bsge endo specialist list,

Please check out Lindles posts on here for more info and General gyne and specialist differences,

Good luck xxxx


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