Endometriosis for 17 years and upcoming hysto - tired and anxious

Hi ladies, I want to say that there are strong women on this site and I feel blessed to have found it. I am 34 with two children and have a history of Endometriosis. I am scheduled for a full (meaning they will remove everything) Davinci Robotic hysterectomy in 2 weeks along with the mesh bladder sling. I have had 2 catheter heart ablations within the past 2 years. I don't remember many days from the time I was 17 until now that were pain free. Migraines, tmj and my pcp said I "probably" had fibromyalgia and put me on Cymbalta and gave me pain meds. My body feels like all the nerves are throbbing all over at times. Leg pains and pain on my buttocks..so I am just down right tired and in unreal overall pain throughout my body. I have tried birth control and here we are now with preparing for a complete hysterectomy. The pain is horrible all over. At times it is agony and although not serious enough to kill me..it does take away letting me live a normal life free of pain. My son turned 13 this past weekend and we had to cancel his birthday party because I believe I had a cyst rupture. I had clear liquid run down both of my legs and if I would have been able to walk I would have made it to the ER. I have looked about 6 months pregnant for a couple of months now and ny stonach gets hard like I am having contractions and I have zero pants that will button due to the swelling of my stomach. It has been hell to say the least. Weeks after my heart surgery the heart Dr. thought I was retaining water so they put me on Lasix. That did nothing to help. I have IBS so I figured I was just constipated..but now I think that the endometriosis is back and is the root of all this evil pain. I just wanted to see if anyone else has had similar issues and if the hysterectomy helped them? I feel alone when talking to my husband about the pains or like a wimp. Or talking to friends who suggest I eat more healthy foods. I take better care of myself than most people I know and that makes all this harder because it doesn't ease my pains or the embarrasment of being in pain 95% of the time.

Thank you!

We are glad you have found us and hope we can offer you helpful information and support!

First, just to clarify to be sure everyone is on the same page and that your paperwork for surgery includes all the right terms, by full or complete hysterectomy are you actually meaning you are having a complete hysterectomy (removal of the complete uterus with cervix) and a bilateral oophorectomy (removal of the ovaries)?

Are you aware that a hysterectomy with or without an oophorectomy is not a cure for endometriosis? I would hate for you to expect this to be a cure and only find out after that fact that it is not. The key for successfully treating endometriosis is the skillful excision of the existing implants. Unfortunately, many general OB/GYN's do not use an excision method and they cannot remove endometriosis from all areas. For instance, many will not touch endometriosis on the bowel walls--been there, done that one myself.

Have you had a second opinion about what might be best for you? Is your surgeon an endometriosis specialist? Have you thoroughly discussed the pros and cons of a mesh bladder sling, too? Will a urologist or urogynecologist be handling this part of the surgery?

I don't want to add to your stress, but I also do not want you to come out of surgery with any surprises. There can be a number of issues with mesh, and if any endometriosis is missed accidentally or intentionally, it can continue to cause problems as well.

Using HRT, if allowed, can also be a complex jungle, so you want to be aware of the ins and outs before you are dropped into surgical menopause. It can also affect fibromyalgia and fuel any remaining endometriosis. Without it, new health issues can occur which can be more serious than the endo.

I am sorry, this isn't a very encouraging reply. I did have a hysterectomy for endometriosis and it only resolved my bleeding issues. Endometriosis was left on my bowel walls so I had to have surgery several years later with a specialist to clean that up. I also developed fibromyalgia following my hysterectomy, possibly thanks to all the complications that occurred with my hysterectomy. Hence, I know first hand that a hysterectomy does not cure endometriosis and it comes with a long list of risks.

Other women do have complication free hysterectomies, but with endometriosis involved we can't assure you that your symptoms will be alleviated. It will depend on whether or not your surgeon will be able to excise the endometriosis and if your symptoms are related to your reproductive organs.

If you have not had a second opinion, and if you do not have an endo specialist, I would encourage you to get one before heading into OR. You should also be sure you have weighed all the pros and cons to determine that this surgery is the right one for you. Be sure the doctor who treats your fibromyalgia is aware of the plan as well, as surgery can flare fibro.

I do wish you well and hope you find the right treatment plan to give you a better quality of life!

Hi Arkansas01, I'm so sorry to hear you have had such a rough go of it. I agree with all that (((Weiser))) has said. I had my hysterectomy for suspected ovarian cancer, but it turned out that I had endometriosis that had not been diagnosed. My gyn/onc was not able to save either of my ovaries because the endo had turned them to "mush." I really wish I could have kept at least one ovary as doing HRT has required a lot of adjustment for me. I can only hope my surgeon was able to remove all my endo implants, he thinks he did, but only time will tell. If I had known I had endo, I would have certainly sought an endo specialist to do my surgery. As for the IBS, fibromyalgia, migraines, and other conditions that seem to be associated with endo, they do seem to be improved, but I have had flare-ups since the hysterectomy, so a hysterectomy is not a cure for them either. I have had pain relief since my hysterectomy to the extent my ovaries were very enlarged, my uterus was covered in endo and I also had adeno, and many adhesions were lysed. I know you are desperate for relief, but there is no guarantee that a hysterectomy will give you long-term relief. If at all possible, please consult an endo specialist before you have an irreversible surgery. in there. You're doing the right thing by researching and asking questions.

Thank you guys. I neglected to say that my surgeon is an endometriosis specialist. Thank God! He said my surgery may take longer to perform since I have so much inflammation. I am praying that he gets all the endo. You ladies are great to talk to. Someone told me they never had to do the HRT but instead her Dr. gave her a list of vitamins to take and she said they work well for her. But I know that is not for everyone. I seriously look pregnant and get so nauseaus from the pain. Just frustrated.

And I am sorry I am horrible at answering questions. But to answer the question of what type of hysterectomy I will be having, it will be a total hysterectomy.

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Originally Posted by Arkansas01 And I am sorry I am horrible at answering questions. But to answer the question of what type of hysterectomy I will be having, it will be a total hysterectomy.

Will you also be having a bilateral oophorectomy? Hysterectomy only refers to the uterus, so I was wanting to verify whether or not you are having your ovaries removed.

HRT can be tricky, if allowed, so be prepared for some interesting days ahead if you do have both ovaries removed. It can take patients, time, and trial and error to find the right HRT if your doctor allows it with an endometriosis diagnosis.

The Dr said "everything will be taken out". I will know for certain when I see him on July 31st for my pre-op appointment. Sorry if I sound like I don't know what I am talking about. Lol. Forgive my tiredness