Confused!!: As yet I have not been... - Endometriosis UK

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Confused!!

Piggy81 profile image
7 Replies

As yet I have not been diagnosed with endo but have so many of the symptoms on here that I am convinced that it is. However, I went to see the Consultant last week to be told that he didn't think it was endo he thought it was ibs! He came to this conclusion as he did an examination internal and external and said that my pain seemed to be coming from my bowel and my appendix. So instead of having a laparoscopy he has put me on mebeverine which is an antispasmodic for ibs!! He also said he would leave me on my contraceptive pill that I have been taking for the last 6 months. So I now dont understand as how is he going to know which is helping (if either of them do). Also if it is ibs would I be getting excruciating stomach cramp pain a week before my period every month if it was ibs?? Please excuse the long drawn out post but just when I thought I would get some help im back to square one! !

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Piggy81
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Piggy81 profile image
Piggy81

Forgot to mention that I am taking my pill back to back but still have periods! !??

cakegirl25 profile image
cakegirl25

Hi I was told the same thing. It took me 4 years to get any one at the Dr's to believe me and when I finally managed to get to a consultant he told me it was ibs straight away (without doing any type of examination!). I followed the diet plan I was given and nothing happened. I went back and said this and was then told I could have a lap but had to do A LOT of begging. I was so convinced as well that I had endo and just stuck to my guns with it and eventually was proven right. Was your pill making any difference after 6 months? Could you not try one treatment at a time and keep a diary to try and prove which one works?

Hope you feel better soon :-)

Piggy81 profile image
Piggy81 in reply tocakegirl25

Thank you so much for your reply. A relief to hear im not going mad!! Yes the pill has helped. I've only had one very bad week of my stomach cramps in the last six months whereas before I was on it back to back I was having pain monthly. Although I still jave back ache and coccyx pain on and off all the time. I could go back to having the week break but I kind of feel I should do what the consultant says to begin with as I have my next appointment with him in two months. He knows what I feel about his decision so I want to look willing to do it his way and then hopefully he will listen to me when I beg ( ;-)) for a laparoscopy! Just cant understand why they assume its something and palm you off with tablets! How does that get to the route of any problem!! What did they do for you? Are you still having any problems?

dabba76 profile image
dabba76

Hi Piggy

It took me 2 years going back and forward to the doctor to finally get a referral. Doc & I thought it was IBS and we tried several different IBS medications to no avail. My pain and bowel problems were and are worse during ovulation and period time. It wasn't until I saw a different doctor after the 2 years she said it may be endo and got me the referral and I got a lap and was diagnosed with endo.

That was 2011 and I feel like the endo is back. Last appointment was the consultant she said they prefer to treat it medically and asked that I try the mirena coil again (it's my 3rd) and wait 6 months. If it's no better she will give me another lap.

I feel like you just have to play the game and go along with them sometimes. But we all know our own bodies and know when something is not right.

I just want this to stop I've been ill since 2009 and just want to be normal again.

Hope your follow up goes well

Kx

Mummyofone profile image
Mummyofone

Go back to you gp don't take no for an answer I did this for two and a half years constant pain being told some people just suffer with ovulation pain!!!! Some times the pain was so bad I couldn't stand up. Finally after seeing a female gp I am now booked in for a lap. Good luck xx

cakegirl25 profile image
cakegirl25

It's just pill after pill and being fobbed off with so many different excuses!

I had a lap a year ago and a Marina coil fitted. For the first few months it felt loads better but after that it's just

Gradually been getting worse. The pain is back and I've just had two really bad days, but did what we all do a smiled through it for work. (Grimaced is probably more what it looked like but I tried!) I've never had a follow up appointment with the consultant and only had appointments right after it was done at the doctors to make sure I want healing. I'm not sure if I'm entirely happy with the Marina, I've put on 3 stone since having it and feel very bloated.I'm tired ALL the time and I'm really struggling at work and mentally, but think I hide it well to others. I hate taking too many pills because I just think it masks symptoms and can create new ones. I had so many tablets to take didn't know if I was coming or going. Are you on any pain relief?

Hope you are feeling ok :-)

Lvb85 profile image
Lvb85

It regularly gets confused with IBS unfortunately as so many people have bowel symptoms. The best person I have seen so far was actually a gastroentrologist who said he thought it was Endo straight away and referred me to gynae though he did every test under the sun to rule out other things. It is often a process of elimination. I tricycled, it stopped working so starting six monthly cycling, it stopped working so now coil and symptoms have improved so sometimes, although a pain, process of elimination is helpful and they seem to want to do that.

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