A little scared

I am 31 and have been having problems for 2 years starting with an uncomfortable pain in my right ovary starting after my 3rd child was born, but now the pain and symptoms have escalated and I have been told that I need to have a partial hysterectomy - possibly a full hysterectomy if they find the suspected endometriosis. I must admit that I was relieved when I was told a month ago about the surgery because it at least gave me a way to get rid of these problems, but now I am only a month away from the date of my surgery and I am starting to become afraid of what will come after the hyster and with the possible need for hormone therapy. Any advice will be greatly appreciated.

I am glad you have found HysterSisters.com and I hope we are able to offer you helpful support and information!

First, a partial hysterectomy means the cervical portion of the uterus is not removed. A full/total/complete hysterectomy means the entire uterus is removed. An oophorectomy is a separate surgery to remove the ovaries. Since you mentioned a concern about hormone therapy, is your doctor considering doing an oophorectomy along with a hysterectomy if endometriosis is present? Some doctors feel an oophorectomy is necessary if there is endometriosis, however, that is not always the best and right decision for everyone. I still have both of my ovaries with stage IV endometriosis because it was felt that my own ovaries were better for me than either no hormones or HRT.

One important fact you do need to know is that a hysterectomy is not a cure for endometriosis, neither is an oophorectomy. The key for treating endometriosis is the skillful excision of the actual endometriosis implants. Any of them that are missed can continue to grow and spread whether or not you have your reproductive organs. This can mean your pain is not relieved with the hysterectomy and/or oophorectomy. Mine wasn't. In fact, mine really got started with my hysterectomy because my OB/GYN was not able to remove all of my endometriosis and adhesions formed from the prior surgeries and endometriosis, complicating the whole mess. I had to have surgery several years after my hysterectomy to have everything cleaned up.

It is very important that you have an exceptionally skilled surgeon rather than a general OB/GYN if endometriosis is in the picture. Look at endometriosis like cancer--if there is a concern that cancer is in the picture, you would be sent to an oncologist to be sure no stray cells were missed. The same is true of endometriosis, you need to see the best of the best who have the knowledge and skills to try to get every single endometriosis cell. If at all possible, look for an endometriosis specialist to perform your surgery. I wish I had seen my endo specialist years before I did! It likely would have saved me many years of pain and problems!

Have you had a second opinion about what might be best for you? Have you tried other less invasive options to see if they help with your pain? Have you had a laparoscopy to see if endometriosis is in fact the problem or a hysteroscopy to see what might be going on inside your uterus? Before heading into OR for a hysterectomy, you want to know beyond a shadow of a doubt that the surgery is the right one for you. If you do not know what is causing your pain and symptoms, you can only guess that the hysterectomy will be the answer. And as you mentioned, there are a lot of things that can follow this surgery including complications and new health issues. Been there, done that!

I encourage you to research your options, get a second opinion if you haven't already, carefully weigh all of your pros and cons, and then do what you feel is right for you! No matter what you decide, know that we will do our best to support you along the way!

Thanks so much for responding! I went back to my dr because I had some concerns about what we had talked about and she told me that she is not planning to do an oophorectomy unless she gets in there and sees that my right ovary is enlarged. She said that she is not expecting that and that only my uterus is going to be removed. I have to say that I am feeling better already. In answer to your question, I have been to so many drs about these problems and this is the solution that we have come up with. The reason for my surgery is not because of the possible endometriosis, but the pain in my uterus which at times is so painful that I can't walk. They think that it's possible that endo is the initial cause of the miriad of problems I have developed, but I guess we'll see after the surgery. Thank you so much for sharing your info and your experience with me - it helps to put things in perspective to hear what other princesses have gone through.