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Stage 1 Endometriosis
A MyEndometriosisTeam Member asked a question 💭

Are there any women who have/had stage 1 endo with a very small amount of endo but still had a lot of pain? And did it go away after a lap?
I had my lap 2 days ago and they removed 5 pinheads of endo (so small that it couldn't been seen on an ultrasound and a MRI) from my abdomen and the doc couldn't asure me if it would cease my pain.....

posted April 27, 2016
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A MyEndometriosisTeam Member

Yes, I was diagnosed with stage 1 and have very bad pain, so intense at times and I'm in pain everyday. Unfortunately the lap didn't help too much with the pain, although I have less pain during sex now. I also have adenomyosis though, and that is likely to contribute to my pain and the only thing they can do to treat that is a hysterectomy I think :/

posted April 28, 2016
A MyEndometriosisTeam Member

I had stage 1 endo and have really bad pain. I was hospitalized literally almost every month. After I was finally diagnosed I had my lap surgery done and my pain stopped. But I did have to get it done twice within 3 months. She didn't get all of it the first time. I told her I was still in pain and so she scheduled the second lap. She didn't believe that there was still endo but I explained to her that I thought it was. She did the surgery and found more endo near my rectum. I am still pain free thank God. I had the surgery back in 2013. But I did get prego after the second surgery, and then I became pregnant again 4 months after she was born. Pregnancy may have kept my endo at bay. I pray that you get some relief because the pain we go through ain't no joke.

posted April 29, 2016
A MyEndometriosisTeam Member

@A MyEndometriosisTeam Member Oh, I can relate to the poop problems- I've had issues since I was a kid too. I didn't know there was physical therapy for that but I guess since there is physical therapy for the pelvic floor muscles then there should be for that too!
It might help you a lot to switch. Hormone therapy can actually help a lot for a lot of people I hear and that's a good place to start. Depo doesn't help with my pain overall but it helped with my urinary pain/ symptoms so I can't overlook it since that was horrible to deal with. I gained some weight with it but I mean I'm bloated all the time anyways soooo I overlook that ten pounds ha.

posted April 28, 2016
A MyEndometriosisTeam Member

They removed all of the endo during my first lap. The second lap was for my bladder to see if there was any endo in there and they (as in the urologist... not a fan of him) just looked around and then did a hydrodistention to see if I had any signs of interstitial cystitis or other issues in my bladder wall, but I didn't.

I have a lot of stomach symptoms with my endo- it causes constipation which is why I HATE taking pain medications for pain. Like I have to be doubled over to take anything because I know I'll pay for it later. I'm diagnosed with IBS but I mean endo affects all that too so it is hard to tell what does what.
Depo is a shot I get every three months of progesterone basically. Aygestin is in the same class as depo but it sucked being on both at the same time. Femara is the devil's drug.... for me at least. It made me super sick stomach wise. I was so nauseated on it. It is used to treat breast cancer though, so I can't say I was surprised.

posted April 28, 2016
A MyEndometriosisTeam Member

You are not alone. I had my third lap in January- second specifically to find/ remove endo- and there was only small amounts of endo where they looked. My OB-GYN also couldn't assure me if it would help with my pain after he removed what he could. I just saw a third specialist last week as I am in horrible pain all the time. I never had any relief after surgery, am on Depo-Provera (which DOES help with urinary symptoms I used to have), and have tried hormonal therapies such as Aygestin and Femara since surgery to no avail.

I hope you get relief from surgery but do know that the amount of endo you have/had does not matter in regards to the amount of pain you are in.

posted April 28, 2016 (edited)

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