Advice and thoughts about hysterectomy and oophorectomy

Hi all. I have a doctor's appointment coming up with a new doctor and I'd love to hear your thoughts before I go see her.

I plan on telling my doctor that I want a hysterectomy and oophorectomy.

I am almost 30, in a committed relationship, no children.

I started my periods when I was 12 and it has been awful ever since and it has gotten worse recently. When I started my periods, they were extremely heavy and lasted for anywhere from 10-16 days at a time. I would have the heavy/overnight pads and still need to change them about every hour. Most of the time, I would even bleed through and have to go to the nurse five or six times a cycle to change my clothes. I didn't like to sit down or stand up, I didn't like for people to walk behind me. I hated it. It was awful. And it happened every 28 days, like clockwork.

It stayed like this until I was about 16. When I was 16, I would start skipping every other month. I didn't complain, after all, I wasn't having to deal with it as much anymore. However it was still extremely heavy and I still had no control over it (so I wouldn't bleed through). This is also when the hormonal migraines started. At first we didn't know what was causing them but then we realized they were hormonal.

Nothing has gotten better since then. I actually bleed more. It's to the point that I can't work or go anywhere when I have my period because in the 15 or 20 minutes that it will take me to get somewhere, park, and go into where ever I'm going, I'll have bled through an ultra tampon, a heavy pad, my panties, and my pants. If I'm at home, I'm changing my tampon every 15-20 minutes. I've even passed out while having my period. I used to just have a dull achy feeling in my abdomen, now I get that along with sharp, stabbing pains. These cramps are so bad that I have crashed my car THREE times. No joke. Once was even a roll over. I also still get the hormonal migraines so bad that I can't move without it hurting worse. And, in recent years, I've developed severe PMDD. I used to get mood swings with PMS but now they are awful, suicidal, terrible PMDD mood swings.

I'm not just jumping right to hysterectomy and oophorectomy. I have seen 11 different doctors, been to four different ER's for bleeding, 3 different ER's for migraines. I've had ultrasounds done of my ovaries and uterus. I've been on six different pills (including the 3-month one), the shot, the patch, and the ring to help with mood swings, cramping, and bleeding, all with no success. I've been to neurologists for the migraines, seen endocrinologists and gynecologists. My doctor has me on lithium for the mood swings but even that doesn't help when my period starts to come. I can't go anywhere when I have my period, which isn't exactly good for the job world. I am miserable. And, when I had roommates, even those girls' periods would start to mess up when mine was around. My maternal grandmother died last year from ovarian cancer, my paternal grandmother had a hysterectomy at 29, and I have an aunt who had uterine, cervical, breast, and ovarian cancer.

I know a big thought for someone my age is "children." I don't want them. And, long ago, I decided that if I did want them, I would adopt out of the foster system. I work with those children and I know that they need stable homes and families.

Do any of you have suggestions? I am at my wit's end. I just don't know what to do anymore.

Thanks. (And if you read this entire thing, thank you even more).

Hugs to you. So sorry that all the doctors you've seen haven't been able to help you.
Your periods sound like my girlfriend who has a bleeding disorder called Von Willebrands. For the longest time they could not figure out what was causing her nightmare.
She did end up having a hysterectomy at a young age because of it.
Hopefully your new doctor can help you find the right solution to your problems.

I read it all! Lol and bless you! I hope you are able to find a Dr who will listen and do as you wish. It really is crumby that women are discriminated against in the medical world based on their age, whether they have kids etc.

Thanks, ladies.

I've decided that the best I can do is research and prepare. I've typed up a list of all of my symptoms, things I've tried, etc. to give to the doctor when I go in for my appointment. Also, per the instructions of my therapist, have been "role playing" with my partner and some close friends (and my therapist). This has actually helped a lot because they've all been able to give me suggestions of what made them convinced (though they already are), how to phrase things, etc. The appointment is two weeks from tomorrow, so now I guess all I can do is sit around and wait. Eeek!

Good luck Becca!
I wonder if you could have endometriosis and or adenomyosis? Endo can only be diagnosed with Laparoscopy. Adeno only definitively by pathology after a hysterectomy. But some scans or MRI can show signs. I myself had endo and really couldn't believe it, but after years of pain had a diagnosis. I just cried. My Dr excised the endo and took many pictures for me to see afterward and for records. My pain did not subside though and it was then suspected I had adeno. I just had my hysterectomy last week. I am hoping an end to all the pain. I did keep my ovaries as they were very healthy looking. Recovery has been a bit more than I thought it would be and I am having a hard time with not doing anything... Really its in my mind though... My body is good with doing nothing lol

An important thing to know is that a hysterectomy and oophorectomy does not cure everything, it does not involve all potential treatment options, and it can even make things worse. It is really important to know what is going on with your body through working with a skilled doctor and examining all of your treatment options.

I would recommend finding a gynecologist who specializes in gynecological disorders and minimally invasive surgery. Unfortunately this is a minority of the doctors out there, and it often takes careful searching to find one, and then further trial and error to find one that is helpful.

I agree with sandra in regards to endo and/or adeno. I had both and my bleeding was horrific as it is for many women with one or both of the conditions. However, both are manageable conditions and neither require oophorectomy.

For my endo I was pretty deadset on BSO until going on Lupron. I could feel how different my body was, and how wrong it was given my age, which was 30 at the time. Menopause is no picnic, and can have serious health impacts. Age 30 is a very young age to be in menopause.

And yes while I did have a hysterectomy, it was for adenomyosis, which is abnormal growth of endometrial cells in the walls of the uterus. I had tried several hormonal options of managing it, with only Lupron providing partial benefit. It was not the first treatment option.

My symptoms were extremely heavy bleeding, with periodic gushing. Daily moderate to severe pelvic, lower back and leg pain, which was completely off the charts during my period, poor bowel function, constipation, partial bowel obstructions, severe nausea, intestinal pain. I had stage III endo and adenomyosis. 2 surgeries later I am symptom free and still have ovaries.

Thanks, ladies.

I know it seems drastic, especially at my age, but I don't know what else to do. I have absolutely NO quality of life. I've even lost jobs because of it. I've seen other doctors, as well-neurologists, endocrinologists, psychiatrists-everyone seems to agree that the problem is coming from my ovaries/uterus. We see the mood swings come in cycles, the headaches are cyclical, it's just awful. Because of this, I do feel that BSO is something to seriously consider. I know that menopause (of any sort) is no treat. A few years ago my ovaries just quit. I wasn't producing any of the hormones and I was having the hot flashes, night sweats, weight gain, etc. I don't want to go through that again (does anyone?) which is why I would like continuous HRT, but my quality of life is so poor at this point that I'd rather go through menopause than keep "living" like this.
Hopefully this new doctor (who has an emphasis in hysterectomies and adolescent gynecology) can help me. I'm open to other suggestions, I'm just doubtful of their ability to work on my body.

Yes, just be sure you have someone skilled enough that can identify and excise if you have endo... (most dr's just laser it off and don't get it all)... If you do and have a hysterectomy and bso you can still continue to be in pain and have problems if you have endo