Severe pelvic pain 10+years after total hysterectomy

Good morning, @pinkbubbblez, oh goodness, I cringe when hearing about your recurrence of pain. I used to suffer from endometriosis and you have my deepest empathy. That was many years ago and the only recourse I had was to take birth control. Now most women have laparoscopic surgery and things generally go quite well.

It never occurred to me that endometriosis could return after a hysterectomy so I did a little research and found out that it can! The endometrial implants can migrate to other parts of the pelvic area and regrow, even without a uterus or ovaries. From the article I’m posting for you, it appears it’s fairly common so I’m a little surprised your gynecologist hasn’t considered this! You appear to have the classic symptoms. https://www.newhealthadvisor.org/Endometriosis-After-Hysterectomy.html

After reading this, I hope it gives you a clearer picture of what’s going on and then call your doctor. If your current gyno doesn’t believe you, get another opinion! You don’t have to live in this misery.

Let me know, ok?

I have seen so many obgyn docs I even went to the female hospital cause I couldnt walk I had to be taken in a stretcher cause it was so painful that was 3yrs ago and all they said was that it's a headache in the vigina I was so upset! Like seriously! They didnt do any laparoscopic surgeries to figure out what it could be they pretty much just said here take some tylenol and rest and it should go away. But I will definitely look into seeing a new gyno and see what else can be done today is a bad day I havent been able to get out of bed yet thank you so much for your response! I appreciate you!

Oh it’s awful to have been so dismissed when you’re clearly experiencing more than a “ headache in the vagina”. Yikes, pretty sure that’s not a medical term and quite condescending ! I’d be livid too!

Here’s a discussion I found in our forum regarding women experiencing the same thing. I’d like to introduce you to @king75…here is her original post.
https://connect.mayoclinic.org/discussion/developing-endometreosis-after-a-hysterectomy/
And another article about endometriosis which I found interesting. I hope it’s helpful too.
https://www.myendometriosisteam.com/resources/hysterectomy-for-endometriosis-knowing-the-pros-and-cons
I’m truly sad you’re having to go through this. Do you live in an area where you have options such as a larger teaching hospital?

I am not sure if there is any here I live in Nebraska. Today has been a very hard day I collapsed to my feet from being in so much pain and couldnt stand back up or move so my husband picked me up and took me to the room. So I been in a fetal position all day. I called the doc and talked to a nurse and she said to go to the er if the pain dont get better. But I really dont want to do that since they wont do anything besides give me meds and send me home I just would like a answer for this pain it's so depressing living with it and feeling like I'm not being heard.

Oh my gosh, I’m so sorry you’re having such horrible pain! Experiencing excruciating agony, such as you’re having, is not normal at all. Have you tried contacting a clinic in a larger city like Lincoln or Omaha?
I’m going to suggest that you seek a second opinion at Mayo Clinic in Rochester.
This is a link to their site where you can request an appointment.
http://mayocl.in/1mtmR63
You don’t need a referral but sometimes it can be helpful. However, since your doctors are failing to even listen to you when there’s clearly something not right, it’s time to pursue the top tier of care.

Would you please consider a 2nd opinion at Mayo?

Where would it be located? Since I have this pain I am unable to work because the pain is so unbearable. This weekend was miserable I seen a obgyn and she said that she sees nothing wrong. I feel defeated and not sure what to do any more. I hate just laying in bed feels like I'm crippled I just want this pain to stop. My birthday was this week and I couldnt enjoy it like I used to. Is there a mayo here in Nebraska? I seen a specialist at the womans hospital in omaha her name was Dr. Naggy (not sure if I'm spelling it right) but she suggested I see a pelvic physical therapist so I did for a while and it never helped. I would love to get a different opinion see a new doctor to see if I can get help and answers

It boggles my mind that all of these gynecologists you’ve been to aren’t taking this pain of yours seriously. Just a quick search on the internet chronicled case after case of women with continued endometriosis after a hysterectomy. From everything I’ve been reading you have all the classic symptoms and there are treatment options if this is what’s occurring with you. Your symptoms sure match.

Have you been offered any hormone replacement therapy or birth control pills? This can help regulate the hormones in your body to help reduce the formation of the endometrial tissue that’s causing the pain.

There’s also the possibility of using ultrasound, CT scans, MRIs or laparoscopic surgery to further check for endometrial tissue deposits. https://endometriosisnews.com/endometriosis-diagnosis/#:~:text=CT%20scans%20may%20be%20able%20to%20identify%20cysts,body%20and%20can%20identify%20cysts%20caused%20by%20endometriosis.

As I suggested before, it might really be helpful to see if you can get an appointment at Mayo Clinic with an Endometrial Specialist. There are no Mayo Network members in Nebraska so the nearest Mayo campus for you would be in Rochester, Minnesota.
This is the link to their home page. You’ll see a phone number for the Rochester clinic. Simply call that number and the coordinator will take your information to get the ball rolling.
http://mayocl.in/1mtmR63
This article really reflects the symptoms you’ve been describing.
https://www.verywellhealth.com/endometriosis-after-hysterectomy-5235482
I found 2 endometrial specialty clinics in Nebraska though it sounds as though you may have already sought care with the one in Omaha.
https://www.nebraskamed.com/womens-health/endometriosis
https://awhomaha.com/obgyn-services/endometriosis.php
I would be relentless in my pursuit to get this taken care of. This is agonizing for you and from what I found in my research it sounds as though it is fairly common and treatable. I mentioned hormone replacement. Was that ever offered to you? Did you have any further tests such as a CT scan or MRI?

I am on a testosterone shot 1 take every week but havent done any MRI's or anything like that lately I will look into the endo doctors here first and see if we could make a trip to the mayo clinic

You were in such agonizing pain the last time we spoke that I just wanted to check in on you. Were you able to get in to see an endometrial doctor yet? Any relief in your painful cramping?

I’m so sorry you are going through this, I am in the same situation. I had a complete hysterectomy 21 years ago (at the age of 29) and have been in severe pain since. Numerous doctors, medicines, laparoscopic surgeries and nothing!!!! When I stand for any length of time, the pain becomes unbearable. So many things affect my pain. I have searched for years trying to figure out what could be causing it or to even see if someone else has had this same problem. I was starting to feel like I was going crazy. The answer I was getting was you have “Chronic Pelvic Pain”! What????? I know this!!!! I need you to fix it! 😭