hysterectomy for endo yes or no?

Does your doctor recommend surgery for the endo? I have doctors who say yes and have those who say no. I am in a quandry.

I am 44 yrs old and was diagnosed with endo and cystitus last May. I also have fibromyalgia, pelvic floor dysfunction and irritable bowel. I had 2 laproscopic surgeries, one for ovarian cyst and one for endo and cystitus. Both my current doctors say not to get hysterectomy but physical thereapy. I previously had physical therapy for myofacial release for 4 months and it all came back. I can't work, can't have sex and am always in pain. Anyone out there like me and did they have surgery for the endo. My endo is supposedly not bad but is on the posterior cul de sac and there are lesions.

Thanks

Jpermits

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Originally Posted by jpermits Does your doctor recommend surgery for the endo? I have doctors who say yes and have those who say no. I am in a quandry.

I was diagnosed with endo 8 years ago and tried a number of differnt alternatives to hysterectomy. I had 3 laproscopic surveries to remove the visable endo. tried lupron ( which made mine worse) and finally a hysterectomy just over 2 weeks ago. Every case is so different and even with hysterectomy there is no guarantee (sp sorry) it wont come back. But for me after 13 plus years of pain and surgeries I was ready to go ahead and do the surgery and believe this will be it for me. that being said also had fibriods and Adenomyosis, so even if there was a chance of the endo returning the other issues arent issues for me anymore. Good luck in your decision. I'll keep you in prayer.

was your surgery done with a laproscope or the conventional method? Are you feeling less inflamed since your surgery?

I have endometriosis, fibromyalgia, IBS, IC, myofasical pain syndrome surrounding my right shoulder/neck, and have had cysts. A hysterectomy will cure none of the above.

Have you ever consulted with an endometriosis specialist? During either of the previous surgeries as your surgeon(s) been able to remove endometriosis from the cul-de-sac area?

I had my laparoscopically assisted vaginal hysterectomy because of endometriosis and my GYN did purposely leave some endometriosis behind due to its location. I recently had a laparoscopy for endometriosis excision and lysis of adhesions with an endometriosis specialist. The majority of the work he did was in that cul-de-sac area where I had endo and adhesions and needed my cuff repaired because of the endo and adhesions. I was told that not all doctors have the skills needed to work in that area.

Because there is no cure for endometriosis and possibly because your doctors do not have the skills needed to work in the cul-de-sac area, your doctor(s) are suggesting an alternative for you that could be benefitial.

Have you been referred specifically to a pelvic floor physical therapist?

Endometriosis is a nasty and tricky disease. It takes very little of it to be a big problem. On the other hand you can have a lot of it and it cause little to no problems!

I would suggest keeping a pain/symptom diary regarding everything you are going through. The more you can share with your doctors the more they can try to help you. I would also suggest learning all you can about endometriosis and the other health conditions you have. We have a lot of information in the Resource Database. If you have not already done so, also talk to whomever treats you for your fibromyalgia. And if at all possible, talk to a pelvic pain specialist and/or an endometriosis specialist. My endo specialist is also a pelvic pain specialist so you might be able to find one who does both!

You will need to work with your doctors to help you feel your best. It can take a lot of patients and persistence. If surgery were the answer I would encourage you to push for it. But it is not. Excising endometriosis will remove the excised endo, but not very many surgeons are skilled with endometriosis excision. And surgery itself can allow for adhesions which can then create additional issues.

I do wish you all the best and I hope you find a treatment plan that helps you feel your best. You might want to give the physical therapy a try, you might be surprised with the results! S

Thankyou for your reply. I previously had 4 months of physical therapy for my pelvic floor and one month of electrical stimulation for my bladder which none of it obviously worked cause I have it all back now. My doctor performed laproscopy for my endo in May or 07. I since tried Lupron and had every side effect possible til it landed me in the hospital. If My uterus is removed won't i get some relief from my inflamation so I can continue with therapy that is all I am looking for. My doctors who don't want to operate are endocrinologist and urogynocologist. I am continueing to find the right answers but tell me is there any releif with the hysterectomy?

If the pain is specifically your uterus, removing it can allow for some relief. However, there are many risks that go along with a hysterectomy so it is not a surgery to jump into if there are any alternatives available. Additionally, if your pain is inflammation of the endometriosis, pelvic floor, bladder, bowels, etc., removing your uterus is not likely to be helpful at all.

If the endometriosis itself is the problem, removing the endometriosis implants could help. If you have pelvic floor issues, the physical therapy might help along with anti-inflammatories. If bladder issues are the case, treating that specific condition might be helpful. If IBS is the source of pain, seeing a gastroenterologist could be benefitial. I have a gastroenterologist, urologist, GYN, and endometriosis/pelvic pain specialist as part of my medical team to help with the pelvic pain I have. Though I have had a hysterectomy, my pain was never from my uterus.

You may want to seek additional opinions about what might be best for you. You could also consider having your records reviewed by an endometriosis specialist who could then let you know if s/he might be able to help you.

I wish you all the best as you keep looking for answers! in there!

did your hysterectomy help you?

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Originally Posted by jpermits did your hysterectomy help you?

Hmm, tough question! My hysterectomy stopped my bleeding. Other than that, it has had a negative impact on my life.

I had no issues with pelvic pain prior to my hysterectomy. I had some right sided sensation which turned out to be an endo inflammed appendix and I had lower backaches but that was it. I didn't cramp. I didn't need pain medication for my periods. My periods were long and heavy and left me drained but there was no pain.

Since my hysterectomy I have had pelvic pain on and off up to and including today! I am still healing from my recent laparoscopy which nailed me more than I thouht it would. It also feels like I might have a cyst on the left side. And it feels like my IC might be bothering me -- I am still figuring out that one since some of the pain and sensations I have had that I had attributed to endo and adhesions have actually been my bladder as I have IC and didn't know it!

In all actuality, I was healthier before my hystectomy. For me, my hysterectomy robbed me of my good health as I was one of the "statistics" -- I had numerous complications and a very long recovery. Because of the complications and long recovery, other health issues were able to creep up and help keep me down.

A hysterectomy is a major, irreversible surgery that can affect us in many ways. Because of my experience and how I was negatively affected by my hysterectomy, along with what I have researched and read, I recommend that women always try any alternatives that might be available before consenting to having a hysterectomy, especially if they have endometiosis. There is no cure for endometriosis. None. A hysterectomy is not a cure for endometriosis nor does it solve all GYN issues. There are several forums on the site that are for women who are dealing with complications from their hysterectomy and/or new health conditions that have cropped up since their hysterectomy.

I am so sorry that you are hurting so much and I hope that you and your doctors can work together to find you pain relief. It may be that you will need a hysterectomy, I don't know. But if your doctors are offering you an option besides a hysterectomy, I think it would be worth trying.

And based on my own experience, if you really feel that the endometriosis in the cul-de-sac area is the problem, find an endometriosis specialist. An endo specialist is the one who will be able to go in and clean that up either with or without a hysterectomy. But you may have to travel out of town, out of state, and out of network for your insurance company.

Sending lots of best wishes you way!

Sounds like you are the one who got bad advice prior to your surgery. I know I have IC, irritable bowel, and fibro. It's the pelvic floor and pain that I want to get resolved. It seems from some doctors that the inflamation from my endo under my uterus is causeing pain and inflamation to other organs and pain to my pelvic floor. Issue is I can't have sex til this gets resovled. Doing nothing is wasting my quality of life. Hope you feel some relief when you recover.

I had a hyst for endo and it keeps coming back, so it didnt really help me, it just gave me additional problems, being on hormones is never the same as your own body. I tried at least 5 or 6 different hormones, until I found out about "bioidentical" hormomes. I now have chronic low back/pelvic pain and can only work part-time , I go to pain clinic and have to take pain meds to function. So, I guess im saying I regret the hyst.