Full Hysterectomy - 5 years later endo pain back

In late 2002 I finally had a full hysterectomy due to my prolonged pain and illness with endometriosis. Well now its back - I didn't think it could come back and didn't recognize the pain at first. But its here. I go to the doctor today to find out a course of action but the pain is unbelievable!! again.

I'm so sorry to hear about your experience! From what I understand, endo implants produce their own hormones--they don't need ovaries or a uterus to cause us misery. The best hope for relief is from excision surgery--that is, totally and completely removing the endo implants. I don't know if you live near one of the endo specialists, but it might be the time to consider seeing one.

i know how you feel! i had my hyst. in 2003 and here i am 5 years later feeling all of the familiar pain of ENDO!
the crazy thing is the 2 dr's i have gone to have not helped me one bit! one said (after he did a US) "boy,i don't see any endo it' can't be that"and the other QUACK wanted to put me on anti-seziure meds!! i guess since it's all in my head!
whatever!!!!
the problem i'm facing is after a hyst. i think they think it's not possiable for it to be endo so they give you the RUN around...... i'm going to yet ANOTHER endo specialist in july so we will c!! my neighbor recommended a woman dr. maybe she will understand? but she's not under my insurance.. so that's out!!! good luck i hope they can help you

Hi Ladies! I'm so sorry to hear that you are going another round with endo!

Thankfully the doctor (a lady) who did my surgery and who is also my GYN said recently to me at my 6 mos. follow-up/annual exam, when I complained of lower right/groin pain that it could be that the endo has returned (its only been a little over 6 mos since my surgery). She said that if it has, the pain will only get stronger and remain, not wax and wane like it has. So we will see...at least she is listening to me and not blowing me off. I too, in the future may need to see an endo specialist. Other ladies have gone the route of an oncologist who specializes in ovarian cancer, etc. since they need to really dig deep to get it all.

I'd be so thankful that mine didn't return for 5 years! Wow, that would be soooo great!

Hi princessh74!

I am sorry you are dealing with pain again and hope your appointment went well today! Is your doctor an endometriosis specialist? The more knowledgeable your doctor the better options you might have.

It can also help if you keep a pain diary so you can "show" your doctor what you are feeling. I have used ReliefInsite’s online pain diary successfully in the past and you might like it.

Unfortunately there is no cure for endometriosis and I am sorry you were not aware that endo recurrence was a possibility. Endometriosis can be microscopic and also has many appearances. Not all doctors are skilled enough regarding endometriosis and might not be able to remove all of the endometriosis which can later cause problems.

I, personally, had a laparoscopy for endometriosis excision and lysis of adhesions earlier this year, over seven years after my hysterectomy. While my GYN did an excellent job when I had my first laparoscopy and hysterectomy, this last time around I chose to travel to an endometriosis specialist due to the location of the endo (some on my bowels left from during my hysterectomy because of the risks involved) and to be sure as much endo as possible was removed. Hopefully I am good to go!

It is possible that your pain is due to other medical conditions so your doctors may want to run some tests and rule out some other possibilities. In my case it turns out that the pain I have had in the pubic bone area is actually interstitial cystitis (IC) rather than endo! So I am taking meds for that and it is helping -- an antihistamine actually! Medications are often used differently than they were originally designed. I take anti-seizure meds for migraines and various anti-seizure meds can be used for pain management. Lupron which is used by some women with endometriosis originally started as a medication to treat prostate cancer. So if your doctor does suggest medications, ask why the particular medication is being suggested, what are the possible side effects, do the pros outweigh cons, etc.

Again, I hope your appointment went well today! in there and do keep us posted! S

Uh, oh... I had a total hyster 5 1/2 years ago (and prior to that had two endometrial ablations) and for the past few weeks have been feeling this oddly familiar pain in my pelvic area and lower back. At first I thought I might have hurt my back working out; then I thought maybe it was a problem with my digestive system.

Well, the more I thought about it the more I got to wondering if it could be endo and came back to this site for the first time in a year for help from all you wonderful ladies. Of course, I'm not happy with what I'm finding out!

For the time being I'm holding off going to my doctor to see if the symptoms get better, worse, or remain the same because I'm sure not going back in for more surgery. In the meantime, I'll keep any eye out here to see what everyone else decides to do.

Thanks, everyone, for your support and good luck dealing with this awful health issue.

Be well!

Full Hysterectomy - 5 years later endo pain back

So sorry to hear that your endo is back and bad, I was under the impression that after my hysterectomy my endo would be gone (at least that is what my Dr. told me ) now 3 years later it is back and worse than before. I hope that you get good treatment and don't wait until it gets REALLY BAD !!!!!! EMERSON