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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Jun 22, 2016
My experience with having a full hysterectomy cause I had endometriosis.
by: Amy

I was diagnosed with endometriosis at around 33 years old. I tried the lupron shot and other medicines before the hysterectomy. The endometriosis was bad enough to have an hyst but not an emergency hysterectomy.

The reason for a full hysterectomy, if you have endometriosis, is that your ovaries feed it.
I had laparoscopy hysterectomy. As soon as I had the surgery , I finally was pain free . felt like a new person. The hot flashes suck and and I noticed I snapped quicker than usual.

I always blamed my family instead of myself.
Yes, its worth it compared to the pain your in everyday. I do not have suicidal thoughts nor am I depressed. Its a great feeling waking up with no pain

Aug 24, 2015
Not to have a Hysterectomy if not sure
by: Anonymous

I suffered badly for many years with severe Endometriosis (and thought my painful periods etc to be normal, as my mother did too); but no..... I was lucky to have a very good Gynaecologist, who performed a few Laparoscopies, and lasered the Endometrial tissue, and was relieved from the pain.

I did eventually have to have an Hysterectomy 20 years later, due to HPV virus which showed up on my Pap smear. If you feel that you want a Hysterectomy, for other reasons, then this is another issue, but I am feeling that my Endometriosis is still there, outside the Uterus, in other areas of my Pelvis.

I still have some problems (painful intercourse), as I am now using Oestrogen Pessaries for the after-affects of Menopause.....so am thinking that I may have to go back to Gynaecologist ( and maybe another Laparoscopy)??

Mar 26, 2015
My experience with endometriosis and hysterectomy
by: Anonymous

When I was 19, mother of one, my Ob/Gyn informed me of the severity of my endometriosis. I had always had excruciating and debilitating periods, extreme lethargy, etc. soon after menses began.

Until my Dr told me of the endometriosis, I had not suspected it. When it turned out to be severe, he informed me that my child was a miracle and that I would likely not conceive again. He encouraged me to have a Hysterectomy and go on Male hormone therapy for a period of time.

I asked if it was absolutely garaunteed I would concieve no more. He said if I had a uterus I could, but very unlikely. So I said, "No thank you." I went on to have 3 more children, with ease. During pregnancies and for a time following, my symptoms were gone, only to return again.

At 34 I had a total Hysterectomy for reasons other than Endometriosis (kept the ovaries). While the endometriosis cleared a little, other pelvic issues persisted for the next 10 years of IBS.

Now, having gone through natural menopause at 44... I encourage you to NOT have a Hysterectomy. Something they don't tell you about menopause is that the reduction in testosterone (they don't like to supplement women with that for menopause) not only decreases desire but ends touch sensitivity (might as well be my brother kissing my neck, etc... It is so blah...) but the clitoral and vaginal sensitivity goes away also.

Sex is lousy. No physical sexual response, yet I DO desire sex. No orgasm is possible... I am now seeking Bioidentical Hormone Doctors in my area. They will supplement EVERY hormone including Oxytocin, test, DHEA, Estrogen and Progesterone. Until then... I want sex and despise it when I have it. HOWEVER... there is a solution.

My 19 year old daughter has endometriosis and she is on the BC shot, Depo-Provera. It interrupts the hormone cycle, ending the period (CAN I GET AN AMEN!!) and stops the pain and exhaustion. When she wants to concieve someday, she can quit the shot and hopefully get pregnant.

I will pray for you. Remember... many Drs do not consider the consequences. Other women who have been there have your BEST interest at heart.

Nov 15, 2014
Been there
by: Anonymous

Hi, I relate with not knowing what to do. Everyone has different advice and experiences. I tried to cope with my pain for over 15 years. At 35, I had a obgyn tell me that he wanted to remove everything. I was scared and all I could think of was losing my youth and maybe getting overweight, wrinkly, old before my time.

I suffered until I could not bear it an ymore. At 50 years old, I have already tried lupron, multiple laparoscopic procedures to "clean up" scar tissue, laser lesions, etc. Last year had only uterus removed.

My endometriosis has spread all over and I am going back in now to have ovaries taken out, with hopes that it will end. I've had signs of natural menopause coming, as well, but I am truly living in hell and can't wait it out any longer.

My husband told me years ago that when it got so painful, I would finally get rid of my ovaries. He was right. I only hope this stops my cyclical pain misery. I don't even care about hot flashes or weight gain, hair loss, whatever other possible side effect of surgical menopause. I just can't take one more month of this awful pain.

Find a good doctor, really read as much as you can and beware of people offering you "their" advice as everyone is different. Find out how advanced you're endometriosis is and weigh the pro's and cons with your own pain.

Good luck and remember, what happened to your mom was probably due to incompetence. Find a reputable surgeon.

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