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Possible Hysterectomy - updated
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06-24-2012, 06:50 PM
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HysterSister
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Posts: 21
Hysterectomy: August 14th, 2012
Surgery Type: TLH
Ovaries: Removed both
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Possible Hysterectomy - updated
I'm new here! First time post!
My story - I had bad periods since I was in my teens. I would get so nauseous and faint in school that I would have to leave class. I ended up lying on the bathroom floor, where the nurse found me almost every month. It never got better. My younger sister experienced the same thing, so we just assumed it was “normal” and that everyone else had that hard of a time.
The older I got, the worse they got. I threw up, got very faint, had horrible bowel problems, excruciating pain in my legs and stomach and without fail I always ended up in the fetal position crying in my bed with a wet rag on my head – every 1st day of my period.
I had never been on birth control, I’m gay, so that was never something I thought about. I never had any other “female problems” so I neglected going to the ob/gyno doctor (bad move I know).
Well, last year the pain had gotten so horrible and it was interfering with my work more than ever before. (I always felt like my boss and co-workers thought I was exaggerating the pain and thought I was using it as an excuse to leave work.) My hormones were out of control! I was having hot flashes and I thought I was seriously going crazy. And to top it off, my periods were so heavy that I couldn’t go 30 minutes without changing a tampon. I finally had enough. So I went to the doctor I explained everything and he looked at me funny and said “you know that what you experience is NOT normal, right?” I said, ummm I always thought it was normal - that mine were just a little worse than my friends.
He explained that he was pretty sure I had endometriosis. I was scheduled for a D&C a week later and the endo was confirmed, along with several polyps, blood clots and cysts on my ovaries. I got through the surgery and short recovery without any unusual problems and started birth control for the first time in my life. Things went really well for awhile. My hot flashes stopped, my pain was reduced to a very manageable level, and I just felt so much better overall.
Fast-forward to 3 months ago. I am now 31 years old. I started spotting every day. All of my symptoms seemed to come back over night – mostly the HOT FLASHES. It’s so bad now that I sweat all the time. I can’t seem to control it. It’s really embarrassing in the middle of meetings when I am completely red faced. Co-workers (that don’t know) are constantly asking if I’m okay, while I’m fanning myself with anything I can grab.
After 3 months of spotting everyday and no actual period, I went back to the doctor.
In 2 weeks, I am scheduled for an ultrasound to see if any cysts, blood clots or polyps have come back. If they have, then the doc knows the birth control isn’t helping. If there seems to be no problems, then I’m going to try another birth control to see if that helps with my symptoms.
We discussed a full hysterectomy (taking out both ovaries and fallopian tubes) and putting me on HRT after the surgery. The other option seems to be continuing to switch birth control until I find one that works with my symptoms or going in every year to get another D&C.
I’m completely okay with not being able to get pregnant. (I have no kids now). I have never had the desire to birth children, I have wanted to adopt since I was young. And I’ve been researching opportunities for adoption for the last year.
However, I am very worried about the surgery itself, the recovery and the HRT. I can’t seem to find stories about early 30 year olds on the HRT. I have discussed the procedure with several friends and family members, but none of them had the same situation as me and none of them were put on the HRT. I've also been diagnosed with ADHD this past year and I have panic attack/depression disorder.
Any advice? Words of encouragement? Other options that I’m not thinking of? Anything at this point will help.
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06-24-2012, 08:05 PM
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HysterSister
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Posts: 2,294
Hysterectomy: April 4th, 2012
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: Possible Hysterectomy after Ultrasound in 2 weeks
Welcome to hystersisters!You have certainly been through a lot. This is the right website to find women that understand. I am glad you have a doctor that believes you and is helping you look for answers. There is an endometriosis forum on this website. There is also a section about HRT. Explore here and research as much as you can. I am not on HRT as I kept my ovaries so I can't advise you there. My advice is let your doctor explore other options with you and only get a hysterectomy if your out of options that your doctor advises may be right for you. You deserve to be pain free and not have all the bleeding issues. If your doctor can't find a good alternative to surgery then you'll know it is hysterectomy time. I had mine about 11 weeks ago and am so wishing I had done it years ago. I do not have the HRT to deal with though, so that makes it easier for me!! Good luck on your journey, and again, welcome to hystersisters!
:cathugs:
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06-24-2012, 08:12 PM
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HysterSister
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Posts: 407
Hysterectomy: June 27th, 2012
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: Possible Hysterectomy after Ultrasound in 2 weeks
I think it's well worth trying out different drugs to see if any of them work. It's great that you have a doctor who is willing to try different avenues.
Hysterectomy is always an option, but it should probably be the last option. Most of us who are pre-op are scared about both the surgery and the recovery. You're certainly not alone in that.
I'm thankful that my doctor put the idea of hysterectomy on the table when I first started trying different meds. It helped me accept it as a possible solution many months ago. I think that helped me deal with it on an emotional level. Even though I chose not to have children, there was still something back there in my mind that didn't want to remove my uterus and end that possibility. Because I had time to process it, the final decision to have a hysterectomy wasn't as bad as it might have been.
Please do try different things your doctor suggests to see if you can get relief. You might find the magic pill!
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06-24-2012, 09:01 PM
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HysterSister
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Posts: 1,257
Hysterectomy: February 3rd, 2012
Surgery Type: LAVH
Ovaries: Removed both
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Re: Possible Hysterectomy after Ultrasound in 2 weeks
sashalynn21,
Glad that you found us here!!!
I am sorry that you are dealing with all of this...I know how scary it can be. I have a very similar story to you as far as painful periods at a young age, endo diagnosis, cysts on my ovaries....
You are doing the right thing by getting as much information as possible and exploring every option. After that, I would trust your , consider second opinions, and only move forward with the hysterectomy if it's best for your health. It is a major surgery.
I'm almost 10 years older than you, but still need to be on HRT. I take the .1mg Vivelle Dot and it has worked great for me. I had menopausal symptoms for about 6 weeks and then they tapered off.
As far as the surgery and recovery...your doctor will recommend what surgery would be best for you, but here is a list of the different types of hysterectomies . The initial recovery from surgery is 2-8 weeks, with full recovery taking up to a year for some.
Best of luck to you, I hope you find some relief soon.
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06-27-2012, 06:57 PM
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HysterSister
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Posts: 21
Hysterectomy: August 14th, 2012
Surgery Type: TLH
Ovaries: Removed both
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Re: Possible Hysterectomy after Ultrasound in 2 weeks
I had my ultrasound today and was able to see the doctor right after.
He said I have a fibroid in the same spot where he removed it last year when i had my D&C. Its now larger than it was last year when it was removed. Attached to my ovary for sure and up against my uterus (i think is what he said).
I am trying another BC pill to see if my symptoms will go away. He hinted at my last visit that if the BC that i was on for the last year wasn't working, he wasn't sure what else would.
Does that sound right? Any chance new BC will help? And if the fibroid is already causing me severe symptoms will the BC help that?
I guess I just am anxious cause its sounding like I will need a hysto one day, but we are putting a bandaid on it for as long as we can.
I'm just so confused!
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07-04-2012, 08:21 PM
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Hostess Mentor Team
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Posts: 10,588
Hysterectomy: April 12th, 1999
Surgery Type: TVH
Ovaries: Kept 1 or both
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Re: Possible Hysterectomy - updated
Hi sashalyn:
Here is a link to the Fibroids section of our Resources Directory: https://www.hystersisters.com/vb2/lin...=browse&cid=26
I hope the new BC will help get your symptoms under control. I am sending huge cyberhugs
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