Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Hi, endowife here. I haven't been on regularly since my little guy was born 14 months ago.
For those that haven't met me, I'm 37, was diagnosed while trying to conceive, and have stage iv endo with all that it entails - lower back pain, pelvic pain, exhaustion, pain with sex, pain with poo, etc., etc...I've had 2 laps thus far during a period of 5 surgeries total in 1.5 yrs to try to have my little one.
I was hopeful that the pain would reduce after birth because my back pain completely went away during pregnancy. but no such luck. in fact it has gotten progressively worse. now I have pain all over including mid-back, knee, shoulders and it is pretty much constant. I'm doing physical therapy and nuvaring for 9 weeks on, 1 week off, plus I'm on cymbalta.
What next? Do I go on Lyrica which has horrible, horrible side effects? Do I push for a hysterectomy since I'm done having kids? Do I do another lap with a nationally renound endo doctor?
I feel like I can't do this anymore what I'm doing. I've been in constant pain now for 5 years and I'm so sick of it. Today was an especially bad endo day and I'm just at my whits end. Thanks for listening, and making suggestions.
For those that haven't met me, I'm 37, was diagnosed while trying to conceive, and have stage iv endo with all that it entails - lower back pain, pelvic pain, exhaustion, pain with sex, pain with poo, etc., etc...I've had 2 laps thus far during a period of 5 surgeries total in 1.5 yrs to try to have my little one.
I was hopeful that the pain would reduce after birth because my back pain completely went away during pregnancy. but no such luck. in fact it has gotten progressively worse. now I have pain all over including mid-back, knee, shoulders and it is pretty much constant. I'm doing physical therapy and nuvaring for 9 weeks on, 1 week off, plus I'm on cymbalta.
What next? Do I go on Lyrica which has horrible, horrible side effects? Do I push for a hysterectomy since I'm done having kids? Do I do another lap with a nationally renound endo doctor?
I feel like I can't do this anymore what I'm doing. I've been in constant pain now for 5 years and I'm so sick of it. Today was an especially bad endo day and I'm just at my whits end. Thanks for listening, and making suggestions.
Both of us have been pretty inactive in the group lately, but Im glad to see you have popped up here, though I am not glad you are still in pain.
I will offer my opinion, and it is just that my opinion.
I would probably push for surgery with a renouned endo doctor. I will explain a little about my situation so you can understand why. (I will try to keep that portion short, though ive been threw a lot in the last 2 years).
You may remember that I was having horrible GI issues when I 1st started on DS. Well those never went away. I saw specialist after specialist in my area and I kept being told it was IBS (which I thought was BS). Finally thought I found a good surgeon and had excision with him last feb. Still had GI issues so I had a renowned but retired endo expert look at my pics and video from surgery. It was his opinon that endo on the bowel was missed...Went back to the surgeon to discuss is and he denied that missed anything...after all he was there and I and other dr were not. He said it's IBS...
I refused to take this as the answer. So I did a lot of research, pushed my RE a lot with the IBS dx and finally got a US from a specialized Dr in my area. Well a nodule came up on my sigmoid...so last surgeon was wrong. But my RE said no more surgery, here these hormones will help (I was already on hormones, gained 40 lbs from them and they weren't helping...) So I decided that I was going to find someone who would take my case seriously. I consulted with some of the top doctors in this country even the ones that were OON. I finally decided to go with Dr Robbins in Maine. I had surgery with him on Friday (the 16th) It was a long 7 hour surgery and what he found was that my intestines were severely damaged by the endo. I lost over 12 inches on my small intestine and the large intestine had to be repaired, though didn't need a resection and other stuff was done as well.
The point of my story is that an very experienced doctor is needed for advanced cases. They can spot areas that other less trained doctors may not recognize or think to look at. A hysterectomy may help some people with endo, but even if you do decide on that you need someone experienced enough to excise all the surrounding disease otherwise you could still have pain. Also, in general unless a source of the pain is coming from the uterus removing it may not be helpful.
I know you have mentioned living in DC (not sure if you still live there) and I don't know of any known experts in your area so you would likely need to travel. I remember you mentioning that you would like to use Dr Cook, but he is out of network...for all insurance from what I understand. But he does offer a free case review if that is something you are interested in.
Also there are many experts who do take insurance. to name a couple:
Dr Koh in WI (likely one of the most skilled endo doctors worldwide)
Dr Robbins in ME
Dr Mosbrucker in WA
Dr Dulemba in TX
Dr Yeung in (hmmmm, I forget what state but it is one of the one's that starts with an 'M')
Dr Nezhat CA
That is just the ones that I can think of atm, there are others There are some in NY and there is a newly established but up and coming Dr in NJ and there is Dr Sinervo at the CEC, but he is also out of network.
Im sorry for the long post, but I cannot advocate enough for people to get care from a true expert if they are able to, especially when dealing with complex disease. I can't imagine what would have happened to me if I hadn't seen Dr Robbins (who is so nice on top of being skilled) my small intestine was so damaged I was at risk for a bowel obstruction.
Let me know if you have anymore questions.
I'm just tired...of the pain...and the fight w/doctors to acknowledge the pain @ 21 years post hyst/ooph. In Fall of 2013, I felt that I made my version of Custer's Last Stand, seeing 8 specialists across 3 states. I ended up being "cast into" pain management, which is not where I belong. I KNOW without a doubt, this disease is consuming my bowel infrastructure. Yet no one will listen. You can imagine how the narcotic pain meds are inflaming those issues.
Don't mean to make this about me. I just felt such inner happiness for Vally when I read your post. THANK GOD you've finally gotten a good doctor! THANK GOD he didn't write you off as damaged goods not worth repair. I will keep you in my heart and prayers for a full recovery, and hopefully a bright future! Take it easy. Be GOOD to yourself and keep us posted.
Hugs~~Pup
We can do it! We can fight this horrible disease. I love life too much to keep fighting for what I believe in.
I love that you had another surgery and hope that you find major relief in the coming weeks and months. Wow, 17th wasn't that long ago - how are you feeling? How long are you staying away from work?
I have good news to share which I'll put in another post called "New Hope" so please read that too if interested. Vally - I agree with you completely that we have to keep pushing for solutions! I will admit that I'm nervous about surgery - I went to the first ever Endo March last year and there were dozens of women who were in their 50's plus who had gone through countless surgeries and they said that the surgeries now have caused other complications. Then again - was it the surgery or the endo?
I LOVE the idea of going to a top endo surgeon. I really really would love to do it, it's just hard with the little one. My son cries if I don't hold him for 10 seconds - imagine trying to go through the surgery recovery! I know I need to do it, just not sure when I will...hence the next post, please read more there.
Plus one other comment - the idea of a HEALTH ADVOCATE is key for us, I'm convinced. I took my husband with me to a doctor's appointment so he could be my health advocate. He told my doctor "please help her! on her bad days it is really bad." It helped a lot in getting their attention.
I already have my tubes tied, had to get that surgery done to have kids (don't ask...Ivf struggles).
I just started my period and this gluten free diet seems to be really working. Fingers crossed!
Sorry it has taken me so long to get back to you. I am actually returning to work on Monday after 5 weeks off. It was suppose to be 6 weeks, but I feel well enough to return now. :-)
I took extra time because we knew it was possible I would need a bowel resection and I work in a busy clinic as a RN. If I had a desk job I may have returned even sooner.
I feel ok so far. My surgeons said it could take several months before my intestines heal enough to know what the result of surgery will be, but I am really optimistic. Even making plans to get off some of my meds and I have been off hormones for a while now.
I can understand your hesitation to have another surgery...Though I do think some of the horror stories come from many surgeries where the endo is burned and not excised. Burning the tissue is not only ineffective, but can cause more scaring from what I understand. I can see how you might want to explore a hyst, but please, I beg you! please make sure they excise the disease during your hyst if that is what you decide on doing. With expert care a not having a repeat surgery isn't a guarantee, but the odds of needing one after expert care vs. surgery from a regular GYN is much lower.
Hopefully you can hold out for another surgery until your baby is a little older...I can imagine recovering from surgery while caring for a baby/toddler would be super hard.