Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Hysterectomy and pain returned 3 months after surgery

by Hopeless
(Spokane, Wa)

I have been suffering from endometriosis since I was 16-17 I just wasn't aware that's what it was. I am 26 yrs old and May 12, 2011 I had a total hysterectomy.

I would tell the doctor about my pain and horrible periods just to be told I needed to try a new type or dose of Birth control.

Finally my mom saw something on T.V. about endometriosis and told me I really should look into it as it sounded just like what I was dealing with.

After doing some research I mentioned it to my o.b and we scheduled a laparoscopy to diagnose it. Sure enough that's what it was, so they started me on Lupron Depot and that was a nightmare. After the second injection I was suffering so bad from psychological side effects ( I had already been fighting depression ) I told them I couldn't handle this treatment any more.

So my last options were suffer or hysterectomy. Well, I have two boys so I figured that's more than a lot of women. I should be thankful and throw in the towel as I really couldn't cope with the pain any more.

After surgery I seemed to be doing all right, the pain wasn't unusual for recovery from a total hysterectomy. Although several months later when I was still in pain and it only seemed to get gradually worse I decided to mention it to my doctor

I was told that it was probably just constipation or IBS or any number of other issues (but not endometriosis). Now I am at a point where they have suggested everything from physical therapy to Methadone treatment for the pain.

I take a low dose of Hydrocodone when needed (as in when I just can't bare it any more) and my doctor has pretty much suggested I find a new provider because she can't help with my pain any more. And since I have no female parts it is out of her hands now.

So now I am in limbo with no pain medication and no doctor, all while being a full time mother and college student. I just don't know what to do any more.


Name: Anonymous

Title: Are you taking estrogen?

If you are taking estrogen, STOP. I did not take err for 2 years, to let the endometriosis they could not remove, die. I have managed for 21 years with once per week 1/2 dosage of Premarin cream. That keeps the vagina healthy enough for sex.

You need to understand you have and will always have endometriosis!

Try to use just enough estrogen to be able to have sex and no more. Estrogen = pain. Find your balance, then try to get back into life.

We have a chronic disease we have to manage.

Name: Miranda

Title: Wow

I had my hysterectomy May 2011 ... adenomyosis ... plus I was diagnosed with endometriosis at age 20 and ovarian cysts ... so i was told that the hysterectomy would fix it ... and guess what...IT DIDN'T.

3 months after the hysterectomy I started suffering again ... just like you. I am so sorry to hear that you are also in pain ... but it's so nice to hear that other people are going through it because doctors have a way of making you think you are crazy ... or just making it up to get pain meds.

I am NOT crazy ... and I do not abuse pain medicine ... I just need help ... not sure what to do. Since the hysterectomy I've had a laparoscopy to see if there were adhesions and the surgeon found none ... and then they did a colonoscopy which didn't show anything abnormal ... and I had a gastro doctor do an EGD which found ulcers from ibuprofen use ... all the while the pain in my abdomen is real ... and its there all the time.

Best of luck to you ... if you ever find anything that works ... email me mkoontz@muasd.org

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