Overwhelmed

This is my first time posting a message.
I was told today that a supracervical hysterectomy was something that I needed to start thinking about. I am 33 and have had bleeding problems since I was 18. I have been bedridden for a week now and there seems to be no end in site. I have been on-line for 7 hours trying to find all the information I can. The messages (stories) I have been reading have been the most helpful and informative I can find. It seems like it should be an easy choice considering that I do not want to feel the pain anymore, but being 33 and having to think of a "Hysterectomy" is so overwhelming. I would love to hear any advice and thank you for listening.

's

Dear Tina,

Welcome to Hystersisters!! I'm so sorry that you are in such pain, but I am glad that you found us and that you are doing as much research as possible before making your decision to have surgery.

I would suggest that you seek a second opinion, in case there is another option for you. Please continue to read and to post your questions. We'll do all we can to help you find the answers.

I hope you feel better this morning.

's

Karen

Dear KDeit,

Thank you for the help. I am new and trying to figure out how to navigate through the website. I thank you for your kind words. My doctor told me to get a second if I needed. He has always been supportive and helpful.
I have so many problems and I am trying to find someone with the same type history. I have Endo. so bad that I have gone under the knife seven times, this last time, I lost the right ovary and fallopian tube. I have a history a large ovarian cyst, and heavy painful periods. I am now bleeding all the time and there seems to be a light and the end of the tunnel, but you can barely see it. I am optimistic that things will turn out fine, but none of my friends understand. They are all in there 30's and are very healthy. It is hard to find someone who understands what I am going through that I can talk too.

Thanks for your help and listening. Much appreciated

Hi Tina

There are many ladies like you here at hystersisters. Although I'm quite a bit older than you (I'm 47) I had a TAH/BSO about a year ago primarily due to stage 4 endo. While I didn't suffer with the bleeding as you describe, I had a lot of intestinal problems, pain with sex, back pain, lots of clots, etc. I had a history of fibroids too and my pathology report showed I also had adenomyosis.

Sad to say, there are many young women like you suffering from endo and facing hysterectomy. It is a very tough decision to make and there are no guarantees. While a hyst can be a cure for some ladies with endo, others have recurrance after their hysts so you have to be aware of this possibility. There are differences of opinion among all the gyns about whether or not to remove ovaries, whether or not to take estrogen and how soon post op, etc.

I agree that a second opinion is a great idea. Have any other alternatives been suggested to help suppress the bleeding? Ablation, perhaps? Do you have other problems besides endo?

My heart goes out to you. I know how difficult this is. Please keep reading and posting and let us know how you are doing. We'll be here to offer support, any way we can.

Beth

Beth,

Thank you for responding. Yes, I have tried a handful of recommended treatments, but none have worked. I to suffer from the backaches, pain with sex, intestinal stuff, and blood clots with my period. I also suffer from ruptured cysts, adhesions, bleeding, bloating, endo., and lots of scaring. I already had my right ovary and tube removed. Things are progressively getting worse. My doctor wants the SAH procedure to be the last resort. He is not pushing, but is very sympathetic to my pain and suffering. I am almost to the end of the rope. I am running out of options and frankly, I am so tired, tired of pain, and worn out at 33. I hate that. I should be healthier; at least that is how I look at it. I found many answers in the chat room. This website has been the most helpful and supportive I can find. It is so appreciated. I am glad to have people like you I can turn to since my friends do not understand what I have gone through for 15 years. Thank you again for the kind words and support. Sorry for the long reply

Tina,
I'm glad that the ladies in Chat have been helpful. I understand when you say that your friends just don't understand. Even at my age, most of my friends had no idea what endo was or what I was talking about. That was tough. One of my dearest friends was aghast that I was actually going to have a hyst. She just could not understand what a toll all of this had taken on my life. I was a wonderful actress in terms of covering up how much I was suffering ... so most of my friends didn't realize how difficult it had become just for me to get through a day.

I wanted my life back and was willing to accept the chance that endo could return because it seemed like the odds were better that I would be endo-free.

Best of luck with this difficult decision.

Beth

Hi Tina,

I'm sorry that you're feeling so bad. I haven't had surgery...I want it, but doctor's say no. I've been living with alot of the same symptoms and I have waisted alot of good years. House bound at times and not feeling well the rest of the time. Ten good days a month is not good enough.

I just want to say...think about surgery really hard because your situation probably won't change. And...menopause is too far off for you to wait for a solution. You have alot of years ahead to enjoy your family. Being strong and on your feet is worth so much.

I know the risks and complications that worry you...but look where you are now...bedridden with no end in sight. It almost appears that you have no other choice.

Allow yourself to feel helpless...with no control over the situation. Allow yourself to doubt, to question and most of all to feel afraid. But..continue with your research and make your decision. Being prepared will help your confidence. Remember, there are alot of wonderful women on site who will buddy up and go through surgery with you. You won't be alone.

My best to you,