Need help with a mystery...

Hi everyone-
I am new to this site, but I am very impressed with all of the information and compassion I am finding here!
I am 23 yo and have been suffering from unexplained pelvic pain for 5 years now. I have right lower quadrant pain, pain with intercourse, lower back pain, occasional sciatic pain, and generally feel terrible most days. I have had 2 laparoscopies, a cystoscopy (looking for kidney stones), my gallbladder removed, and numerous bloodlettings and urine cultures, which have all produced normal results. I have tried chiropractic care, physical therapy, massage, painkillers, "sleeping it off", and a wide variety of herbal cure-alls, but nothing is working. My OBGYN is so wonderful, but she is running out of options for me. I see her on Thursday this week to schedule a hysterectomy. I guess I am okay with that, since she is predicting an 80% chance of relief from the pain. Most people think, "80%! that's ok for rain, but for surgery success?!" I know, it seems drastic, but I am willing to try anything to lead a normal life again. Yes, I am young, but I have two beautiful children and I am ok with that (also lost 4 babies to miscarriage, don't want to risk another). I guess what I need right now is some info from any of you that had the procedure done to relieve pain from an unknown source. I know this is what I have to face, probably this next month, and I need some help in the right direction. Do you think it is worth the risks to possibly become pain-free?
Any and all advice is greatly appreciated! Thanks so much!
Kelly

Hi there. I'm sorry you have been going through so much and I can surely relate to your situation. I had my TAH/BSO done on Sept 24th. I had mine because I was having some abdominal pain (mine was on my left side) and constantly felt like I had a UTI if I did any kind of fairly strenuous activity. I also had terrible periods with awful cramps and large clots. I had my symptoms for over 3 years and had lots of different tests done, all showing NOTHING. I was really starting to second-guess myself and finally had enough and told the Dr. I wanted to have a hysterectomy done ASAP. He told me that just the fact that my periods were so bad that I was definitely a candidate. Turns out I had Adenomyosis ( a form of endometreosis except it's on the INSIDE) my left ovary had a significant sized cyst on it , my right ovary was polycistic, my uterus was twice the size of a normal one ( the Dr. said it felt "boggy") and my cervix was inflamed. Oh yeah, they also took my appendix and said it had buried itself and was attached to my bowels. I hope you find the answers you are looking for too. ( By the way since my surgery I have had NO pain in the left pelvic region and as far as the UTI's so far so good. I do have a little pain after I urinate now but I think that is due to I'm still healing. I hope this helps put your mind at ease some and I wish you the very best. If you have any other questions or concerns let us know. Good luck.

Hello sorry to hear of the problems you are having. I am also having a hysterectomy without knowing the exact reason I am having the symptoms I am having.I am bleeding excessively am in constant pain and have right side pain. I decided I can no longer live like this and am hoping this will take care of the problems. I have had a lap, hystescope, and D&C with no real answers to my questions. They "think" it might be adhesions, but are not sure.This does not answer your question, but at least you know you aren't alone. hope you feel better soon.





Tami

Hi Kelly and welcome to Hystersisters! I'm glad you found us! This is a wonderful hysterectomy site with many supportive, caring women. You will find great information here to encourage and help you.

My best wishes to you! Love and s

You might want to ask your doctor for a pelvic venogram, to see if you have pelvic congestion.

I have had unexplainable pain in the lower right quadrant for many many years now. 2 1/2 years ago had a laparoscopy to have a "look-see" and they couldn't tell me what was causing the pain. Had several ultrasounds, and I went to the hospital several times for severe pain attacks. Finally went to a new doctor that recommended me to a pain clinic and right off the bat th doctor sent me for a pelvic venogram and found that I have vericose veins in the pelvic region... all the vessels and the veins are affected. Was told that if it were one or two vessels affected, they could just ligate them and fix them (kind of like they fix vericose veins in the legs), but as all the veins and vessels to my female organs are involved (I got a wonderful score of 9 out of 9 on the test - 0 being the best score... 9 being the worst) I pretty much will need a hyst in the next couple of years.

There has been some success with pain management in less severe cases with high levels of progesterone. I chose to go that route rather than do surgery at that time. I started taking 30 mg a day last May and felt FABULOUS for about 2 1/2 months. Unfortunately, I have gone back to having alot of pain and finally decided to do the hyst a couple of weeks ago. I got my surgery date today... Next Monday. Wish me luck, as I am soooo looking forward to not having pain anymore! (I am also having my gallbladder removed at the same time)

Good luck with figuring out what is wrong with you. Have you made the decision to do a hyst or are you still deciding? Hang in there. I know how it feels to have such pain and not have any medical explanation. YOU ARE NOT CRAZY!!! Whatever you decide to do or not do... make sure you are 100% sure it is what you want to do. It took me many months to be mentally ready to make the decision, but other than the shock of the surgery being scheduled so soon, I am at peace with my decision. Good luck and remember you are not alone!

Please discuss these misgivings with your doctor and I don't blame you for having them. This is MAJOR surgery with a long recover (more than the advertised 6-8 weeks fer sure), and you have no real diagnosis to your problem. Have you had a laprascopy by an oncologist or a pelvic pain specialist? They can usually (not always, but ususally) identify what the source of the pain is. Pain mapping can be used to identify the source of the pain as well. Before consenting to surgery, you might seek a second or third opinion to be certain. This is a big deal. Without having a diagnosis, it really is a risk that your pain won't be helped. Adenomyosis can usually be identified by laparascopy by competant doctors. Sometimes it is illusive, but generally the uterus appears grey and boggy to the touch. What's one more opinion before having surgery?

You might also ask your doctor where she's basing the 80% figure. Is this just her "gut instinct" or are there facts to back it up. If it's instinct...I'd definately get another opinion.

Kelly

Welcome to the best site on the web for those who have or are considering having a hysterectomy. This site has been an absolute Godsend to me!!

Like you I had excruitating pain with my periods starting at age 19. I've had MRI's, CAT scans and enough ultrasounds to plaster my walls with. Nothing ever showed. I went to my OB/GYN, my primary physician, my chiropractor and an osteopath. Each prescribed a different treatment: birth control pills (at least 3 different doses), pills to slow down the bleeding, herbal remedies that made the pain almost bearable and finally a failed uterine ablation. Mostly they were puzzled and did nothing. I was beginning to think I was being a cry baby

Finally I went to a very well recommended OB/GYN that the girls at work swore by. If only I had gone sooner I could have felt this great earlier.

I had a TAH on 8/27!: I no longer have painful intercourse, miserable periods so heavy that they caused anemia and all the other related nightmares.

It turned out that my ablation caused more damage than good and I had endo starting and a polyp on the outside of the uterus.

You have my complete understanding and sympathy. If you and your doctor are okay with a hysterectomy than go for it girl!!

Good luck.

Kelly,

I want to welcome you to HysterSisters, too! This is a great place to come for information, advice, and great support from all the ladies! I'm glad you found it!

I don't want to discourage you, because this is solely YOUR decision, and no one can or should make it for you, but...Get another opinion..I had my hyst on 8-28-01, and am still in almost constant pain 9 weeks later, along with new ones that I didn't have before surgery. I've just recently found out that all my pathology reports were perfectly normal, except the cervix, and that didn't require a hysterectomy...I go tomorrow to the Mayo Clinic, and hopefully I will find some relief - after my latest hospital stay, I've found out that I have an inguinal hernia, and possible nerve entrapment..could have been the cause of the pain all along...You live and learn.

I don't mean to frighten, just to inform - Make sure that you are comfortable with this, and that you totally trust your doctor. This also means having a definite diagnosis, and not just "I think" like I received..I wish I had done my homework better.

My best wishes to you, and please keep us informed on how you're doing!

Stacey (TAH w/Burch and appendectomy) kept ovaries (for now)