New and nervous

Hi everone,

I'm so greatful to have found this site. I don't feel so alone. I just have a few questions. Two weeks ago I went to my gyn for an exam. I've been having extremely heavy bleeding for at least the last 6 months, maybe more. I have to use 2 super tampons and an overnnight pad every 1 to 1-1/2 hours and still have accidents!

I'm scheduled for a uterine biopsy tomorrow, and an abdominal ultrasound on Wednesday. My blood test came back showing anemia, but I'm not sure what my bloodcount is. Will ask tomorrow. I started taking iron pills as per Dr's orders.

Dr. said my uterus is the size of 16 week pregnancy. Dr. suspects fibroids and can feel a mass.

I'm 45 years old. My mom went through menopause at 52.

Here is why I am so scared...

12 years ago, I was in the hospital having my pregnancy induced. It was a serial induction that failed because I developed a fever after 40 hours, and they did a c-section. It was very painful the next few days because of the infection and I developed a paralytic ileus by the 3rd day. They had to insert an NG tube thru my nose into my stomach because my intestines had shut down. They kept checking for bowel sounds with a stethoscope on my abdomin, but heard nothing. Finally, after 4 days of this torture, it was disconnected. The gas pains after the surgery were the worst! I guess it was all trapped inside because of the intestinal problems. Thank God my dd was healthy and we finally got to go home. I was in the hospital a total of 19 days. 9 days before her birth because of pre-eclampsia and 10 days after.

One month later, I was still having discomfort. I went to a gastroenterologist who said he thought I should go to a gyn. I went to a new one, who said I hit every pothole in the road that was possible with all my complications. He had the radiologist do an ultrasound that showed a large hematoma. He wanted to go in thru my still sore scar and remove it laproscopically(spell?) I just couldn't see myself back in the hospital having another surgery! A third gyn laughed at this suggestion and said it will be absorbed by the body. Since the 2nd opinion Dr. did not accept my ins. and I dreaded another procedure, I ignored his option.

2 years later I had a scheduled c-section that was a breeze. I went in on a Friday morning and went home on Monday. Everything was perfect. My ob/gyn at that time told me that I had massive scar tissue and adhesions from the first surgery. He had to do some cleaning up of this during the c-section and said it was mostly on my left side and he wondered if I had difficulty getting pregnant. (which I hadn't).

My problem is that I imagine that there is even more scar tissue and adhesions and that everything is stuck together. I'm terrified that I will have these complications again and I am already losing sleep at just the thought of it.

My Dr. said surgery is possible. I know I have to wait until all the results are in. It has been a number of years since I went for my exam and I know that that is foolish. My dh has been reminding me for quite sometime. My pap test was negative, and I'm praying that the biopsy is also. My symptoms are as I said extremely heavy periods and bloating, and the anemia. The Dr. wants me to take 2 iron pills, so I'm guessing the anemia is pretty bad.

If it turns out to be only fibroids, I almost want to say I'll live with them to avoid surgery. Is it dangerous to live with anemia? I don't mind taking the iron if it helps. Has anyone chosen to leave them alone, even if they are huge?

I'm sure that every case is different. Any advice would be appreciated. Please don't lecture about waiting a few years for a check-up. I would never let my kids go without their annual check-ups. I used to be a great patient, now I'm just a nervous wreck. Thanks for listening.

Liz

Hi Liz,

No lecture coming ...

I can understand why you are so concerned about the prospect of additional surgery. And yes, there are women who choose to live with their fibroids, regardless of the size. However, anemia is a problem that you will need to resolve. Be sure to ask your doctor about all the risks associated with anemia so that you understand all the ramifications of this condition.

If it turns out that your problem is fibroids (and it very well could be) then ask your doctor to discuss ALL the possible treatment options. While hysterectomy is one option, often there are others. There are treatments like bc pills or progesterone to minimize your bleeding and prevent anemia. There are treatments like UAE (uterine artery embolization) that are minimally invasive and can successfully treat fibroids. Myomectomy involves surgery, but only the fibroids are removed rather than the entire uterus.

When I was dealing with fibroids, I found lots of help here at Hystersisters and I also found good information at this website too:

www.thefibroidplace.com

You'll also find lots of links to other great resources in our Resources forum (click the word "Resources" in the list at the top of this screen, then do a keyword search on fibroids or other topics and you'll get a list of resources we have compiled on that topic).

Please keep us posted on what you find out from the upcoming tests. I know this is a scary time. I'm sending extra hugs your way.

Beth

Hi Liz,
Just chiming in to share my story with you in hopes that it helps you feel calmer and more informed...

I had a huge fibroid 11 years ago. UFE was not really being done then, so that was not an option. My doc back then wanted to do a hyst, but I was recently divorced and still hoping for kids if I remarried.

If I knew then what I know now!!! I had a mymectomy that went well, even though the fibroid was much bigger than they anticipated. I had almost "normal" periods (some PMS & pain) for 2 years... and then started having trouble again. Serious pain and bleeding every month. My gyne suggested that I may have both fibroids (confirmed on ultrasound) and adenomyosis. Adeno can be seen on some MRIs, but is really only confirmed on the path report after a hyst. She recommended a hyst... I was still very nervous and fearful about doing anything that seemed so radical to me.

The month of June was hideous for me -- I ended up in the ER twice for bleeding and pain and almost needed transfused. I began doing my homework and found this site and others. HS provided the best information and wonderful support.

I had an MRI to see if I was a candidate for UFE, but the fibroids (at least 4 of them) were too small. I looked into ablation, but that would not remove the adenomyosis that seemed to show up on the MRI. I finally agreed to a hyst. That's when I learned that a laparoscopic supracervical hysterectomy would work for me. That meant removing only my uterus through a small incision in my tummy. I am now 3 wks post op and soooooo very glad I had it done. I have had NO BLEEDING in 3 weeks and I no longer feel like I am pregnant with Edward Scissorhands.

They found multiple fibroids, confirmed that I had adeno, and repaired multiple adhesions (I lost my left ovary to adhesions). My DBF describes it well, "You were a train wreck in there!" and "They sucked half your guts out through your belly button!"

Even if I had to have a total hyst and had to face menopause, I feel like it would still be so worth not living with all the pain, bleeding, and anxiety about missing work and leaking and... ugh! You know!!!

That's just me... You need to look at all your options. Do your homework and ask LOTS of questions! Your sisters are here for you. Don't be shy about going in to your doctor's appointments with a list of questions about your condition and what s/he would recommend.

Sorry for the long post, but my heart went out to you when I read your note. I've been there!!!



Lisa

HI, LIZ!

I just wanted to share with you that I have great compassion for what you have been through. I am so sorry you went through so much trauma.

I tried to live with bleeding like you describe for two years. The bleeding only got worse every few months to where I was wearing 2 super tampons and 2 pads/ changing every 20 minutes. My periods were lasting up to 18 days. My hemoglobin count dropped to 5.9 and I fainted driving my car on a major highway on day. After going to the hospital, I required 6 units of blood and an 8 day stay, including a hysterectomy. It took me over a year to get my hemoglobin back up to 10 and I was ill for quite a while. It is now 3 years later and I am healthier and happier than ever. I had no complications from the surgery, so I understand that is part of your hesitation. But, I had forgotten what real energy feels like! Thank goodness I was not injured nor did I injure someone else in my accident. If I had it to do over, I would have asked for a hysterectomy earlier on. My metabolism kicked back in once my anemia resolved and I lost 40 pounds, weighing what I did in high school again! I hope whatever you decide, you will take good care of YOU because I am sure you matter to a lot of people who love you very much. I had to learn that the hard way!Blessings!
Cherie