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

Comments for Hysterectomy and pain returned 3 months after surgery

Average Rating starstarstarstarstar

Click here to add your own comments

Apr 13, 2018
Same Boat
by: Anonymous

Reading your post makes me feel less crazy. I am just barely 2 months post full hysto. They found endometriosis, andenosyis, and 3 different kinds of cyst with multiple cyst on both ovaries and fallopian tubes.

There was some scary stuff inside my fallopian tubes which had been cauterized 13 years ago. I was diagnosed with endo when I was 20 and have had 4 laps and 4 dnc's. I have had 2 miscarriages and 2 live births. My last pregna+ncy was through invetro at 34.

After my last pregnancy my endo got worse. My doctor refused to do a hysto without me doing 6 months of lupron. After one month I was in such a scary place that I knew I could not continue on lupron. It was a nightmare. I decided to get a second opinion. Within 30 seconds of my examination the new doctor told me she could feel fibroids. She immediately scheduled my surgery.

2 months later I am trying to figure out why I still hurt. I am 99% sure that they did not get everything or that the endo has spread. At this point I don't know where to turn.

May 20, 2016
Going through the same thing!
by: Anonymous

I literally am feeling the same thing all of you ladies are feeling. I was diagnosed with Endometriosis when I was 17. My treatment plan consisted of 4 diagnostic laps to clear the endo, lysis of adhesions and remove cysts every time. I went on lupron (the worst thing I have ever been on in my entire life).

I have tried every birth control out there. Nothing worked and it took me almost a year to get pregnant with my first daughter when I was 25 but thank goodness I was blessed with a wonderful pregnancy and birth.

Shortly after having her I started with the endo pain again. I was started on an IUD which was horrid but later had it taken out and was put on loestrin. It was a little over a year and my doctor said lets either do another surgery or you try to get pregnant. I chose GET PREGNANT lol.

First time trying we conceived my second daughter. Two kids and I had pain literally 4 weeks after having her. My doctor said lets just go ahead with the partial hysterectomy laproscopically. I had it done Jan 20th, 2016 and I am still in tremendous pain.

Every one of my follow up visits have been written off as me doing too much because I have two children under 2 that I am home with alone all day. I STILL should not be in pain 4 months after my surgery. My surgeon kinda just wrote me off and told me to go to a womens rehabilitation center "stretching of my pelvic floor"...WHAT???

It already hurts...WHY IN GODS NAME WOULD I WANT SOMEONE PULLING AT IT!!!?? IN any event I am going to see a pain solutions doctor and hopefully get the treatment I need. Good luck to you ladies and please respond back if you found any luck with your follow ups.

Jun 15, 2015
I understand you!
by: Anonymous

Hello Dear, I read your story and became sad. I myself had a partial Hysterectomy May 2015, and the next day after surgery My Gyn was asking me did I feel any better...I was like this must be some kind of a joke!

Honey, I've just had surgery less than 24 hours ago, I couldn't possibly tell you anything, I need time to recover. Anyways, she called me about a week after the surgery and asked how I was feeling, again too soon to let you know anything.

My post op appointment was on June 10, 2015 which I was like 4 weeks in and of course she asked me AGAIN how was I feeling and I told her that I was still in pain and she immediately started asking me about my personal life and was anything going on at home because she couldn't fathom why I was still in pain after her " perfect procedure ".

Long story short, she said that I had anxiety and fibromyalgia and prescribed Lyrica, then had the nerve to say " I don't want you to think that I think you're an addict, Dr's who think you're an addict will just give you the medication. What! Is what I said to myself....

1. I didn't ask you for anything 2. An addict is exactly what you think I am. So with reading your story it brought back memories... I know that this pain isn't in my head and I know for darn sure I'm not an addict. I'm so over her!

Click here to add your own comments

Join in and write your own page! It's easy to do. How? Simply click here to return to Your hysterectomy experience.

You might like these

As featured in: