Still trying to decide!

I'm new here and looking for your thoughtsand help. I've had endo for many years. I've had several laperoscpies (sp??). My most recent was in 2/2001. I went to my general doctor a couple of months ago because I had a bad bladder infection and a lot of lower back pain/pressure. I did have a bladder infection, but that cleared up but the lower back pressure continued. I even had a stool sample tested to make sure I had no problems in that area. I eventually went back to my gyno who after examining me said unfortunately he thinks my endo is back again. I'll be 41 in Sept. Since I'm already on BC pills he suggested as a last attempt to take them continually to try and supress the endo. Well, it's been almost 2 months and my back pressure, though it had subsided a little, is back in full force. I also get very bloated. Since I've been on BC most of the time, by periods are never really bad except for the lower back pain/pressure, bloating and cramps. Now that I'm taking them everyday with no break I also have very bad PMS! Has any once else had these problems? I am ready to call my gyno and tell him I give just so I'm not always in discomfort. The thing is I feel bad for complaining because it's not like I'm home in bed bleeding to death and taking all kinds of drugs for the pain. But my quality of life is definitely affected. I'm moody, always tired and my husband is tried of me never wanted to do anything. I just want to make sure I'm making the right choice. Sorry this is so long and drawn out, but I hope someone will understand and respond to me. THANKS!!

Hi Sherryanne

Endo is tough to live with. Your symptoms sound a lot like mine were. I had a TAH/BSO about six months ago, primarily due to severe stage 4 endo. I had suffered with lots of intestinal problems for many years before then, including back pain. I had several bouts of what I used to call "back flu" in the last couple of years ... now I wonder if that was the endo too.

A hyst is major surgery, as you know, and this is a decision only you and your gyn can make. There are no guarantees that you will be endo-free forever, even after a hyst. However, many ladies report they are pain-free and just fine after a hyst done primarily due to endo.

Keep reading and posting, get a second and maybe a third opinion. Be sure that you are ready to take this step. I'm one of the lucky ones who has had great results so far. Let us know what you decide. We'll be here to provide support, any way we can.

Beth

Thanks for your reply Beth. It's good to know I'm not the only one with those symptoms. Today my lower back ached so bad. It's just a constant pressure. If I had to make a decision right now, I'd say take it all!!! But I'll wait and see what my gyno says. This site is wonderful and I do plan on reading and learning as much as I can. I'll let you know if and when I make the decision. Thanks again!

Sherryanne,

I felt like I was reading my story all over as you described yourself! I had been on BC pills for 10 years due to severe cramps, heavy periods causing anemia several times, and my doctor just wanted to shorten up the days where I would flow to try and avoid anemia.

During the time I was on the BC pill, I had horrid cramps. During the 10 years the cramps did get worse as I got older. I also suffered from back pain and hormonal headaches. My cramps and headaches were so severe that my classroom aide could tell which days I had pain. She said I had a different color about me. My face looked ashen she said. She knew exactly.

I talked to a couple of different doctors (gynecologists) and got their opinions. In January, 2001 I did go ahead and have a TAH/BSO. My quality of life has been restored. I did have a uterus full of adenomyosis and a moderate case fof endometriosis plus some small fibroids.

I advise you to get a 2nd and possibly a 3rd opinion from other gynecologists. You want to choose the treatment plan that is best for YOU.

Please keep us posted and I wish you well.

Hi - I'm new here too and have been reading lots of different posts while in a state of confusion. I am scheduled to have a Hysteroscopy and D&C on May 28th, next Tues. Because of my insurance, I have had to change Gynecologists too many times to feel confident with anyone.

Last October, I had extreme abnormal bleeding - 5 days then a week off. Then another 7 days and a week off, until another 5 days of heavy bleeding and passing clots. I went to a new Gynecologist who just listened to me and said I was starting menopause. She then prescribed Provera to be taken for 21 days then off for 10. She did NO tests or physical exam and told me to come back in a month for a PAP. I bled through the Provera and decided to try a different doctor. This time I had a complete exam, hormone level test, thyroid and CBC. She told me to take the Provera for the last 10 days of the month and see what happened. A few days later, she called and said that my hormone test showed that I was in fact starting menopause and to stay on the Provera.

Well, I then started to feel generally sick, had vaginal dryness and got a vaginal infection (bacterial). After 4 months on Provera, I was having regular periods - whatever regular is. She then decided that I needed Estrogen and Progesterone for the dryness and feeling like I had a constant bladder infection. I tried for 2 months to take Mircette and was okay for about 2 weeks. I was getting breast soreness, shortness of breath and gaining weight by the day. My periods came on schedule, but I had headaches, nausea, dizziness and the worst PMS. I was one who rarely had PMS, and am not a person who generally has headaches. When I started to get the shortness of breath and weight gain (20lbs in 2 weeks), I called the doctor's office. My Doctor is on Maternity leave, so her partner took the call and told me to try to stick with the Mircette for another month. I tried to keep taking them, but 2 weeks ago I couldn't get any of my pants or bras on. She had warned me that if I stopped the pills, I would start to bleed again. After a night in ER, having tests for blood clots in my lungs (severe shortness of breath), along with severe nausea and burping that was relentless, I was told by the ER Doctor to see my Gynecologist as soon as possible. Every test done came back normal.

I called and spoke to the same doctor who told me to try to stay on the pill, and she didn't call back. I called again the next day and begged the nurse to have the Doctor call me back. By that time I was bleeding and having large clots and bad cramps. She suggested a Hysterectomy, but told me that I would have to wait until my Doctor was back from her leave ( 2 weeks away). The bleeding and clots were almost unbearable, so I called another Gynecologist on my PPO Plan. He seems to be totally against a Hysterectomy and is the one who is doing the Hysteroscopy.

I am scared out of my wits to be put under and probably find out that I will need a hysterectomy anyway. There is not a woman in my family who hasn't had a Hysterectomy for Fibroids or Endo. I have had surgery for Endo in 1992, and was also found to have cysts on both ovaries. That's a whole other nightmare. I don't think I can keep going on playing hormone and scope games. I need to go on with my life. I am planning to get married and my sex life is being ruined. I am aware that a Hysterectomy is a major surgery, but I would rather go through it and take the time to recover. I have almost constant cramps, headaches and bloat after every meal and feel horrible. Any input will be greatly appreciated :P

Thanks,
Tatoodogs

i don't have much time to write, at the moment, but i wanted to tell tattoodogs and sherryanne that i think you're both very brave! tattoodogs, reading your story was hard because it's a lot like mine -- i know exactly where you're coming from, because i'm muddling through right next to you!

will right more later -- but for now, my only advice is to following your instincts... about your doctors and your surgery. only you know what's best for you...

please, keep us posted!

Hi Mandy,

Thanks for your reply!! I'm trying to go with my instincts, but I feel so lost and out of control with the way medicine has changed. I was so afraid of doctors after my surgery in 1992 that I didn't have a PAP for 6 years. What I didn't mention was that during the Laperoscopy, the doctor found some adhesions on my intestines and abdominal wall. I had discussed the surgery at length with him and it was decided that the surgery would be LASER ONLY. Aside from the small incisions made for the scope, there was to be NO cutting with any kind of knife.

When I awoke, both of my parents were in the day room. There were nurses taking my blood pressure and pulse constantly and I heard my mom asking where my doctor was. I was still very groggy, but knew that something had gone terribly wrong. I have had some major surgeries for kidney stones and never felt so bad when I woke up from anesthesia.

My mom was frantically trying to get my doctor on the phone and my dad was pacing the floor while I was feeling like I was in a Twilight Zone of nausea and needles. When I looked at the clock, I realized that I should have been home 5 hours before and was getting really scared. My mom finally reached the doctor and was told that there were complications - the adhesions, and that the surgery took a lot longer than expected. He never did come to see me in recovery or my day room. I begged the nurses to let me stay overnight, but because of insurance, I was sent home with my parents.

When we got to their house, I was so sick that I couldn't walk. They had to carry me up 15 stairs to their door and put me on the couch. Within minutes the phone rang and it was one of the nurses who stayed with me and was concerned about how I was doing. The next thing I remembered was waking up in my old bedroom and having to go to the bathroom. I started to get out of bed, but I couldn't move my right leg. I fell down and couldn't feel anything in my right leg at all.

To try to make this as short as possible, I'll cut to the chase. After a year of brutal tests, I was diagnosed with a severed 5 branch nerve and Lymphedema. I sued the doctor and hospital and settled with the doctor. After 11 days in trial, I lost with the hospital and am still suffering with leg swelling and intense neurological pain.

When I said that I was scared out of my wits, that was putting it mildly. As soon as any doctor finds out about my lawsuit, I am like poison. I went to an HMO Gynecologist 2 years ago, and he did a pelvic ultrasound. He couldn't find my right ovary and said that he had never seen a colon in spasms like mine was. He told me that I needed a Colonoscopy and wouldn't see me again. In total fear, I went to my old family doctor is no longer in practice, and he was the only one who was not afraid to deal with me. He examined me and said that I am a maze of adhesions and scar tissue and that no doctor would want to do surgery on me. He prescribed Xanax and Sleeping pills and wanted to give me Methadone for the pain in my abdomen. I nixed the Methadone and now live on Motrin. I'm out of Xanax and have no Family doctor now. I'm getting more scared by the minute, and am near panic. I know that my insides are a mess and I want the mess OUT. My fear is that the true findings will be hidden in the report from the Hysteroscopy, and I don't know who to trust anymore. I just want to feel normal again and have hopes of no more abdominal pain and fear of clots from playing with hormones. I don't know if I'm brave or desperate.

Tatoodogs (Nancy)