Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Endometriosis and hysterectomy advice needed

by Mary
(Edmonton AB)

I'm on a waiting list for a hysterectomy, however, I'm not sure what type I'm having or which procedure is being used. I need some advice from women who have gone through this before I do something I may regret.

Some background information:
I am 52 years old and believe that I'm going through the beginning stages of menopause because I've been experiencing hot flashes that are so bad that I always carry a paper towel in my purse so that when I'm out and the severe sweating starts, I have something to at least wipe the dripping sweat from my face.

I've been so embarrassed by this and for some time, refused to even go out in public, I have irregular periods, vaginal dryness, and most of typical symptoms I've read about. My periods as I said are irregular, and some months I have two of them, with spotting in between. During my periods, I experience such severe pain that I have to curl up in a fetal position, with a heating pad and have shed many tears over the pain.

I have had 3 kids and the best way to explain the pain is to say that it feels like end stage labor pains in both my lower beck and pelvis area.

Sometimes, I have extremely bad cramping that can last for days but no bleeding until the 3rd or 4th day dealing with the cramping, which gets progressively worse. When I start bleeding, it is very bad, causing me to change tampons or pads every hour to hour and a half. There are clots in there that the size of cherries or sometimes bigger and this excessive clotting and bleeding lasts anywhere between 4 to 7 days. I can't leave my house and stay in bed during this time due to both pain and bleeding. I have worn tampons and two pads at night and usually it goes through my pyjama pants and at times, right through onto the bedding.

This all started about 5 years ago, and prior to that, I would have severe cramping, and regular to heavy bleeding, but the pain was manageable through Naproxen. I have had ovarian cysts/fibroids, but they have always gone away.

There are other times, where I will have severe bleeding, and very little cramping and have noticed that the more severe and bigger the clotting, the more pain I am experiencing.

I've heard too many horror stories about hysterectomies including my own mother, who had one at 48 for the same reason I would have one. However, she had complications and has been wearing an adult diaper for urinary incontinence since 48, and she is now 83. She became extremely depressed, and overnight she went into instant menopause that caused her to become anxious, mood swings, loss of sexual drive which has never come back and as she told me, she gives in to my dad but hates every second of it.

My mom has begged me not to do this because of how she went from a happy person, never experiencing depression, to having mood swings, suicidal thoughts, many physical symptoms, as well as complications from the surgery itself, perforated bowel. 5 months later she was diagnosed with colon cancer after several emergency trips to the doctor, and they had to do a blood transfusion on her due to another complication while removing the tumors, causing her to wear a colostomy bag, which she wore for over 10 years.

I'm not clear on why they couldn't remove it sooner. Now she is 83, is again dealing with colon cancer, just had surgery, and was told she will have to wear the bag for the rest of her days. She was living in a different country at the time, so I was not able to get a clear picture of what happened, other than a doctor's note that was sent to me.

Her GP told her that all of this, including the colon cancer was a result of the hysterectomy and as I understood it, she had precancerous cells on her cervix, which were transferred to her colon during the operation, which the doctor believed was why the polyps became cancerous

She told me if she had to do it all over again, she would have suffered the few days of pain and heavy bleeding every month than with what she had to and is still enduring today.

I would like some opinions as to whether or not I should just let nature take it's course, as I am 52 and go into natural menopause or go and have major surgery that may not even help me in the end. I read a post on here from someone who had the procedure done, and the endometriosis just came coming back. I've read up on this, and it is very common for this to keep coming back.

I'm at my wits end because my husband hates hearing and seeing me suffer like this every few weeks and doesn't even want to listen to the possible complications or possibility that it may not even help at the end of the day since the endometriosis can still come back.

I would appreciate any opinions or comments from the women on here because my in-laws are angry at me for not wanting to do this and my husband refuses to speak to me when I'm gong through the monthly pain. It's my body, which I keep telling them, and I have to live with any complications.

I feel like they are being selfish because they can't handle seeing me in pain, yet are not informed at all about any of side effects or complications. My husband keeps talking to me like its a simple procedure and I will be up and running around in a week.

I told him that if he had kidney stones and was asked to take out his kidney to prevent more from forming, would he do it? I look at this as being the best analogy I could use.

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