My Story

Hello Ladies! Today is my first day posting on this site and frankly, I wish I didn't have to.
I have a history of endo, infertility and increasingly heavy periods.
Last year, I started having alot of pain to the point that I was doubled over and vomiting when it happened. My periods were also coming more often and heavier. After some testing, I was put on bcp's to regulate my period.
After about 5 months of changing bcp's three times and the pain continuing, IT started!!!
It was the end of January and I started hemmoraghing. It was like nothing I could have imagined. Non stop,clots the size of my fist. The first time it happened I was in the car and it was everywhere and I had just changed my overnight pad. I had to get myself into a service area with a bathroom and when I stood up, it just poured out of me. Thank God, I had my pooch in the car with me and, therefore, towels!!! It continued lighter for about 2 weeks and then it started again. I won't go into the story about the nurse in my drs office but I finally got an appointment and I suggested having my hemoglobin tested BEFORE my appt. My hemoglobin had dropped to 6.7 in a two week period!!
I was immediately put on prometrium and iron 3xday. My dr suggested an endometrial ablation at that time. I knew that I had fibroids and they had grown so I knew that I would need a D&C ,biopsy along with the ablation. I was told that the fibroids could be shaved down and then the ablation performed.
I had to increase the prometrium because I still kept bleeding and at this point, I was pretty much on bed rest to control the bleeding until my surgery date in March. An ultrasound was done beforehand but the view was blocked and could not be read properly.
Well, my hour to hour and a half surgery turned into 5 hours!
My dr started to do the D&C but my uterus was very enlarged and FILLED with tissue. She said she couldn't believe what was coming out of me!! Then the D&C,biopsy and when she took a look after that she found ovarian cysts and my tubes were twisting and COVERED with growths.The ovarian cysts were removed and my tubes were taken out. Alll turned out to be non-cancerous,thankfully! Then to the ablation, My uterus was too enlarged and the machine was not functioning properly so after three tries and the manufacturer on the phone with my dr, no go!
I forgot to mention that I was given a shot of Lupron before the surgery.
Now, 6 months later, I am still on Lupron. My dr was hoping it would shrink my uterus and fibroids enough to eventually do the ablation but, even though it has worked, its not enough.
I've been bleeding on and off on Lupron and have had to get 2 of the shots early.
I was given the choice of myomectomy but since that would be abdominal and the odds for the fibroids growing back, higher than I would like, it look like a hyst for me.I would really like to be cut open once, if possible!
My dr will be putting me on hormone replacement since I've been on Lupron so long but that won't be until about October.
My dr thinks that I have a 50/50 chance (I think less) and if I get a hyst, it will probably be around Christmas.
I have been trying to get all of the information that I can so I bought the HysterSisters Book and really enjoyed it!
So I registered here today and I am hoping to find out as much as I can.
My dr thinks I should take out everything and I am leaning that way. Any advice would be most appreciated!

My gosh, Goldie! If I were in your shoes I'd be beating down the doors of the hospital demanding a hyst *now*. Of course, that's just me... But really, I personally wouldn't go for the myomectomy because it would not mean an end to your problems, in all likelihood. And even if it did absolutely "cure" you, and all you have for the rest of your life are normal, regular periods, you're still left with the continual doubt about your future - will the problems come back? Would you feel comfortable planning a 3 month trip to Europe for a year from now, for instance? How about taking a job that involves travel? Teaching, where you'd be stuck in a classroom for hours at a time? Just the unpredictability about the future was one of the things that made be ask for a hyst. With a hyst you have a pretty solid picture of what the future will look like.

Please do some reading on Lupron. I don't know much about it, and have never been on it (refused it), but I think there is a very short limit to how long you should use it. Something like 3 months, or 3 shots... I'm not sure, but please look into it. It can have some disasterous side effects, like osteoporosis.

Good luck, whatever you choose to do.

Hi, Goldie! You are one brave lady! You are going through the steps--checking out info, making sure how you feel about it, and gee whiz, you seem calm for all that's happened to you. I really admire you!

Horsewoman's been there, done that (I'm still in the researching phase ). She sure makes some good points for you to think about!

I wish you much luck and LOTS OF DARK GREEN VEGGIES (for iron). I've been anemic a couple of times because of bad periods, and the fatigue is numbing, isn't it?! Didn't see this in your post, but if you continue taking iron tabs, you might want to check into also taking a stool softener (buy it over-the-counter). Iron tabs can constipate.

You'll get much from this site--good personal experiences to share and learn from, compassion, caring. I really believe you will benefit to the point that when you do make a decision, you will definitely feel at peace with it, no matter what the decision is!

TAKE CARE!!! Here's an to give you a BIG for all you've been through.

Thanks for your responses!
First to Linda, I have checked out alot about Lupron and you're right about it. It can cause bone loss and lots of side effects.
I've been taking calcium since I've been on it and I've been continuing excercise to help. I've done exceptionally well on it. I have had the headaches, hot flashes etc but it hasn't been too bad. I have noticed an increase in mood swings lately and the hot flashes have intensified but otherwise, I feel fine. But thanks for the warning!
What type of hyst did you have and when?
I was told that I will probably have to have a TAV and I think the incision is what scares me the most. I've only had laparoscopic surgery so I can't imagine what this will be like. I do have a good tolerance for pain but not for pain killers.
Jeannie, I want to thank both of you for your kind words! You said you're in the gathering info stage as well. What is your story? Maybe we could compare notes?!
I know Linda said she would be asking for the hyst now if she were me but I'm just happy to be getting a little more time!!
Even xmas seems so close to me!!
Thanks again!

Hi Goldie,

Well, like I said, that's "just me". The only thing that got me through a lot of very painful periods as a teenager was knowing that once I turned 18, and as soon as I could earn enough money, I could have a hyst and get that over with. HA! Ahhh, the innocence of youth. I thought you could just go get one. I never wanted kids, not for a second, so I really resented dealing with 25 years of useless periods.

About incisions... I had a laparoscopy (tubal, plus a good look around) 6 weeks before my hyst. Dang, those lap incisions smart! I had a lot more pain from those (2 little holes) than from my TAH incision. After my TAH I could get out of bed OK, sit, bend, etc. Everything really hurt after my lap - especially wearing jeans. That could be "just me" too, but don't be too worried about the incision. It's a happy accident of nature that the TAH incision just happens to cut the nerves that would let you feel it. By they time they start working again (at about 2 weeks), it's not so bad.

If you're bored, and looking for more info, you can read my whole story by clicking the "www" button at the bottom of my post. I had my hyst December 19, 2000. No complaints (except for having to wait so long, of course).

Wow! I just finished reading your story!! I didn't even know that you could do a TAV with a spinal!!! I have so much to learn!!!
When I had my surgery in March, D&C,Lap,etc. I was pretty uncomfortable but I didn't want to take the meds since they caused alot of nausea.
I had three insicions since they pulled my tubes out thru one.
But I have to say, if it's anything like that, I definetely can do this! I am just afraid that its going to be so much worse! Maybe not! And, you know, once its done, its done! I'll just get thru it!!
I only have a 70lb golden retreiver to deal with. I can't even imagine having horses!! Must be great! I work for a vet and just love animals. When I had surgery in March, my pooch was so upset around me. She felt better as I did.
I'm glad you have a supportive hubby!! So do I, and I think it makes all the difference!
I learned alot just reading your story, so thanks!

Hi, Goldie--

Would be glad to share notes with you since I'm trying to get lots of information for a Dr. visit on the 23rd.

Have you heard the quote, "I was sad that I had no shoes until I met a man who had no feet?" In other words, I have been getting near the end of my rope as far as what I think I can put up with, but then I read about your experiences--mine seem so insignificant!

I have had the very heavy periods with many large clots, increasing pain, a fibroid, enlarged uterus, a cyst on my right ovary. Have had 3 endometrial biopsies to check out the heavy bleeding (last one in April, everything is o.k.). Have been on Premphase, which really I thought was mainly for meno-like symptoms. (except that my day-long hot flashes were really a thyroid problem!) Took Prometrium 10 days out of the month in May, June and July, thinking that what I needed was the progesterone to balance out the estrogen. Well, that wasn't it. Had another period from heck in July while still on the Prometrium.

So compared to what all you've been through, what is happening to me is nothing!! The bad periods do affect my life to a certain extent. I teach and getting someone to cover my class while I run to the bathroom can't always happen in a timely manner I've bled to anemia twice and then had to ask time off from work to recover. Also not a good thing. I tried to teach Sunday School last week, and by the time I rushed home, I was a royal mess (and so was the bathroom before I got it and me cleaned up -- geesh.) I have stayed home or limited the time I'll be out when one of the periods happen. Had a hysteroscopy in April, too, but again my report didn't list all the concerns you have.

I really think you are being very smart, researching things out. Even though this is listed as a recovery site, I don't really look at it as a "pro-hysterectomy" site at all! Many, many women who post their experiences are like you and me. There is no surgery date set because they are still checking out their options. Others who have had hysterectomies, did try to wait things out until menopause (when SOMETIMES some symptoms can get better), but found that was not possible.

I wish you good luck in checking things out and a peaceful decision when you make one

You know, it's really funny, after reading yours and others stories, I was thinking that MINE is not so bad!!!
You sound like you've been thru alot and sure, I'd love to compare notes.
I probably won't be seeing my dr till sometime in October but I'm doing alot of reading about this.
I think I'll be fine when the time comes.I'm a very optimistic person and I keep thinking that I'm doing so well on Lupron partially because of that.
I think we're so lucky to have websites like this to learn so much!
What has your dr told you about your situation?
Do you like your dr? I think that's half the battle too!
Thanks for responding and I look forward to 'talking' to you more!

Goldie

I just thought I would pop in and say hi . Hi

Anyway you are making me wonder why I am having a hysterctomy. Holly you have gone through a ton. I never ever bled that bad. My heart goes out to you for never being able to have children. I cannot relate.But hey if you ever want to look after my to you can the little one is how do I say it. A women of her own>

Take care and you always know that I am there for you

Lots of love

Hi! So glad you found me here!! Listen, we have all been thru alot. I don't think any of us can compare one situation to another!We can only do what is right for us!!
Not having children has been the roughest thing my husband and I ever had to go thru but I have lots of friends with children and its gives us time to spoil them!! I have a wonderful marriage and I know that no one has everything and there's some reason children weren't in the cards for me.
All of your posts sound like you take the time to enjoy your children and I just love to see that! Enjoy every minute with them!!
Thanks for thinking of me. You're always in my prayers, especially now that your date is getting closer!
Any time you need some support, I'm here!!
Be well!