Pre-approved, waiting to schedule Laproscopic Hysterectomy

Hi, I am 26 and I am going to have a hysterectomy within the next month. We have tried a handful of other options and this looks to be the only way to get rid of the pain and bleeding. I keep running through my head wondering if this is too extreme. I know I need to do something because it has taken a toll on my day to day life.

I am scared and not sure what I need in the way of support. I have been hiding behind jokes to avoid showing how vulnerable I feel. Another friend of mine is having a hysterectomy in 2 months and it is nice to know I am not alone.

My husband is supportive and comforting but I am having trouble keeping my mind off of this.

Hi Pookie3716 to HysterSisters!

I am so sorry you are going through this, and are in such pain.

Your fears and nerves about this surgery are very normal - this is a VERY BIG DEAL. But, you are very young to have a hysterectomy. I see from your survey that you have endo. Have you seen an endo specialist? From this site, I know that a hysterectomy is not a cure for endo, and that the disease can continue to grow without the uterus being present. I also saw that you have cancer, pre-cancer, or suspected cancer growths. Do you have a diagnosis on that? So, this might suggest you need to see a gyn onc.

Make sure you are seeing the right doctors to make the right decisions for your health. You need to make the right decision for you.

We are here to help and support you. You are not alone - never on this site! I know this is scary and confusing. We are here for you.

Try using the search option on here and type in how to prepare for surgery/hospital/post op. There are many good suggestions that might help. As for the support take whatever you can find, you will most likely need help at home.
Maybe also get a second opinion if you are wondering if this is too extreme. I knew that I did not want to carry on the way I was but then I am older than you. I also knew I didn't want kids. I am not sure what your situation is but maybe get that second opinion to at least give you piece of mind.

Having Endo is awful! Medically speaking the doctors have tried everything to help control my Endo and the pain, yet I am still in pain. I am younger then you so I had to see a lot of doctors and specialist. With the guidance of the doctors, the support of my hubby and listening to my body I feel that having a hysterectomy and oophetectomy while excising all the Endo is the best path for me. Best of luck to you!

Thank you so much for the replies.

To answer a couple questions, I have Endometriosis, Adenomyosis, a tumor (probably fibroid but with my history of Sarcoma they don't want to mess around), and I also have fairly regular large ovarian cysts rupture causing heavy bleeding, fever, vomiting, and acute pain. Cancer has not been diagnosed but it is a worry. I was told that a core biopsy may or may not be accurate because they can't guarantee that they would capture the malignancy.

I have 3 children and we knew we were done 2 years ago. I am comfortable with not having more children.

We have tried birth control pills and the Mirena. We have tried the Endo diet, Chiropractics, and acupuncture. I considered the Endometrial Ablation for the bleeding but I was told it would not help with the pain. I have gained 55 pounds in only 3 months despite diet and exercise. My iron levels were extremely low even with iron supplements.

I got a second and third opinion. It was pretty shocking being told a hysterectomy, complete excision of the Endometriosis, and possibly an oophorectomy would be needed. Nothing has helped the pain and I have become a shell of my former self. I am frustrated because I hurt all the time, my cycles are only 20 days long and I am bleeding heavily for 14 of them.

I do not want surgery if it isn't a last ditch effort. I keep holding out hope my cycle will regulate, the pain will miraculously disappear, and the tumor will shrink, erasing my fears of another battle with cancer.

Pookie3716 -

I am so sorry you have all of these issues with endo, ando, and more. I really wish I could wave a magic wand and make it all go away.

Sending many as I can for you.

I am so sorry you are having these problems, especially at your age. I also had endo (stage IV) and adeno. Both were diagnosed during my hysterectomy. My hysterectomy was done by a gyn/onc because both he and my regular gyn thought it was likely that I had ovarian cancer. I had many of the same symptoms you describe, and I understand how debilitating it can be. As (((marestail))) mentioned, among the opinions you have gotten, I hope you have consulted an endo specialist and a gyn/onc. You should also discuss hormone replacement therapy with your doc as it can be tricky with an endo diagnosis. There was no saving my ovaries, but I'm hoping you can keep yours if you decide on a hysterectomy. That solves a lot of HRT problems. Complete excision of the endometrial implants is the only way I know of to rid yourself of endo ... else it may come back even after a hysterectomy. As for adenomyosis, which is usually diagnosed during surgery, a hysterectomy does help and it doesn't come back. Here is a link to our endometriosis forum where you can read threads by other women facing decisions like you are facing. Endo Forum. Also, here is another link to articles regarding endo that I found very helpful in understanding my diagnosis: Endo Articles. Finally, I suggest you keep a symptom diary to help you when you meet with doctors so they can better understand what is happening to you and help in proper diagnosis and treatment : Symptom diary. Just know that you are not alone, and there is plenty of info here. Keep asking questions.

(((Pookie3716)))

I'm so sorry you've been dealing with all of these issues. It's perfectly normal for you to be scared, not that that makes it any better. But, you certainly are not alone.

I did want to mention that if gyn cancer/pre-cancer is suspected (or diagnosed), we recommend consulting a gyn/onc (gynecological oncologist). They are the experts for these issues, and it never hurts to get a second opinion prior to major procedures. I also wanted to be sure you were aware that we have a Cancer Concerns forum which deals with these issues, and you're welcome to post there (or just do some research) as well.

Sending hugs and prayers your way!

Hi ... 26 is very young for this decision . I had a TLH due to heavey bleeding polyps in my uterus ovarian cyst the pathology came back cancerous! I chose to have everything removed! I lost my mom to ovarian and breast cancer 25 years ago when the medical world was not so advanced as of today! I haven't had genetic testing just in fear of the results! Like my mom I have had pre cancerous cells in my breast and had a lumpectomy ! Every test/ pap/mamo is just a scary situation! I'm so happy for my decision for a TLH I'm cancer free right now and healing great! The surgery itself wasn't that bad at all! Keep posting and good luck!

Thank you all, I love hearing your stories and experiences.

Would my GYN need to refer me to an oncologist/gynecologist? Or is it acceptable for me to call them up myself and express my concerns? The doctor I have chosen for my procedure said it is not outside the realm of possibilities to diagnose uterine cancer or a sarcoma in a patient in her 20's but it is not "normal". My diagnosis of Stage 3 Clear Cell Sarcoma came when I was only 4 years old, that isn't normal either. My luck has never run toward normal, except my fear of surgery.

My husband is trying to focus on only the positives like no need for birth control. I am worried about how I will feel in a year and if I will be glad I did this.