Can anyone tell what might be wrong?? LONG

Hi, I am new here, someone just told me about this site last night. I have had problems for a long time and not sure what to do, I need advice.
I will give some history. I went on the pill at about 16. Periods have always been very heavy with bad cramps. The pill made them very light with mild cramps. I went off the pill and got pregnant and had an abortion when I was 19. After the abortion, i was passing very large clots and hemmorraging. I went back on the pill, and the pill stopped it. I suspect now as I look back that i had endometriosis and/or PCOS, but my GYN never did any tests for it, he just said I wasnt ovulating, and to keep taking the pill. After that, everytime i went off the pill, i would get very heavy periods with a lot of cramping, and passing large clots. they would last longer and longer, and come sooner and sooner. I had a baby at 25. As i got older i would actually get physically sick every month if I wasnt on the pill, with a fever or some unrelated infection, swollen glands, night sweats. I have hepatitisC and CFIDS, but symptoms get much worse around my period. It could be just my immune system is weaker from the hormone change or something. Three years ago i started getting sick even with the pill. I was fine while i was taking it, but the week that I was off i would get a light period with mild cramps still, but get physically sick, fever, swollen glands, etc. I tried going on the pill all the time, and only going off one week every three cycles instead of every cycle. This worked great for about a year, then i started having major problems. i was bleeding all the time for over 6 weeks. The gyn put me on rounds of progesterone, but every time I stopped them, I would start to bleed and it would not stop even after weeks. i was anemic and gained a lot of weight. I had a sonogram and they found ovarian cysts and uterin fibroids. They never mentioned endo or PCOS. They wanted to do surgery to remove the fibroids, saying that might help the heavy bleeding. (I had two opinions). I told my regular doctor about it, and he treats stuff with herbs, so he told me to try herbal remedies before resorting to surgery. This was january, 2000. It worked like a miracle. I started getting a regular period every 24 days for 4-5 days. But it was still very heavy, and I would get bouts of low blood pressure. I got tested for PCOS, and they said the hormones came back pretty normal, although i think they were all messed up from what I have been reading. The LFH and FSH didnt match up, estrogen always very low, never over 50, usually under 20, and the progesteron low. Testosterone looked ok. I have also been having bowel and bladder problems, and been diagnosed with IBS. This summer I have been having a lot of lower ab pain even when not on my period, periods are heavier and coming closer together. I have pain all the time, and its not always like cramping, sometimes sharp pains. I pass large clots, like I woudl guess about 2-3 ounces big. He started me on more herbal remedies and progesterone cream. it seems to be making me worse. I am starting to think from what I hear that i dont really have IBS and its really endo instead. I dont know what to do. if I go back on the pill, it will probably help the endo, but it is bad for the fibroids. I am terrified of surgery because my immune system is so weak, and because I am afraid of adhesions and more pain. i cant go on like this. I am thinking my choices are surgery or the pill, and i dont know whats worse. Sorry this is so long.

Hi Ro

After reading your post I felt like you were describing me.
I started with the same symptoms after my second child when I was 26. I now have 3 kids. I also have cfs and fibroymyalgia.

Every time I would have a period I would spike terrible high temps and often was admitted to the hosp. because they didn't know what was going on.

Long story short I spent many years thinking that I was a total nut, Only to find out now at 38 that I have severe endo and very large fibroids.

I don't worry about my immune system and the chronic fatigue because the pain has become so intense that I have no quality of life. I have decided to have a TAH on Jan 13 and at least rid myself of this pain.

I can't tell you what to do, that will come after you have gotten all the info that you can. I just want you to know that you are not alone and that we are hear for you.

My thoughts and prayers are with you
Karen

Yikes. What a saga. And a mostly familiar one.

I may have missed it, but why do you think you might have endo?

Of course I can't guess at what might be wrong in your case, but I can tell some some of my experience. I had the following:
- Awful periods right from the start. Out sick from school, no PE... clots, cramps, flooding...
- Went on the pill at 15 to deal with them, which made them tolerable.
- Went off the pill for one month in 23 years, and felt horrible the whole month.
- At 35 my periods got much worse. Tried different kinds of pills - no help.
- Periods increased to 10-14 days, sometimes twice a month.
- Tried continuous BCPs, and bled continuously for 40 days.
- In the last few years I got flattened by every little bug that went around (although I did not notice any relationship to my cycle), including fevers, night sweats, etc..
- Leg and back pain and weakness during my periods.
- Feeling fatigued during my periods.
- Bowel cramps and diarrhea the first couple of days of my periods. (Remember that IBS isn't really a diagnosis, just a description of a set of symptoms - it only says you have touchy bowels, but nothing about *why*.)

It turns out that my whole problem was two little fibroids. No endo, healthy ovaries. The one inside my uterus was bleeding from a ruptured blood vessel, basically. I suppose they were pressing on nearby nerves and blood vessels to cause the pain and cramping. The endometrial lining produces some hormones, too, so maybe that was a little off, but it looked normal in pathology.

The result of my hyst was that all those problems vanished. For the first 361 days after my hyst I did not catch *anything* - I was not sick one day. (I was hoping to make it a whole year...) I think the constant bleeding had just weakened my system so much before that I didn't have the strength to fight anything off.

I was nervous about quitting the pill - would my body know how to function on its own? - but that's been fine.

I don't have any experience with Hep-C or CFIDS, but if you go for surgery, do everything you can to help your body be strong - start walking (now) if you don't already do regular exercise, eat very well, and get lots of rest (with all you have going on, 8 hours a night may not be enough. Keep up those good habits after surgery. You may find that your immune system will be stronger.

Best of luck with your decision!

Thanks for the replies. Its good to know I am not alone. My mom and my sister have similar problems, and my mom is past menopause now, but her take on it is that it is all part of being a woman, and it is normal. This is NOT normal.
The reason my doctor is now suspecting endo is because of the bowel and bladder problems. The fibroids are small, so i dont know that they would cause problems all over my lower abdomen. Also because I got better with the pill. the pill helps endo, but supposedly makes fibroids grow larger. But I may be wrong, he is not even a GYN. I havent gone back to my GYN since he reccomended surgery. But I may be going back.
Thanks again.

I'm sorry to hear about all the pain and suffering you have been through.

Unfortunately, endo does not always show up in ultrasound, so it is possible that you have endo along with the fibroids and ovarian cysts. Surgery is the only way to accurately diagnose endo, unfortunately.

Also, ultrasounds don't always tell exactly how many fibroids you have. From my ultrasound, my doctor thought I had 4 large fibroids and possibly an ovarian cyst or fibroma. It turned out I had 7 or 8 fibroids and 4 cysts from endometriosis.

Depending on your evaluation, a surgeon may put you on a GnrH agonist (like Lupron Depot) to hopefully stop your periods and help you build up your blood for surgery.

Whatever you decide to do, I hope all goes well for you. In the meantime, take care of yourself.

Hi Roro,

Some of your symptoms also sound like adenomyosis. Both endo and adeno are difficult (if not impossible) to diagnose without surgery. Many ladies don't get a definitive diagnosis of adeno until they learn the pathology results from their hysts.

With all the problems you have going on, it sounds like you do need to go back and see your gyn or get a second opinion from another gyn. Also, it is pretty common for ladies with fibroids to learn that they have adeno too, especially gals in their 40's.

Hang in there and let us know how you are doing. Keep reading and posting and make the decision that is best for YOU.

Beth

Thanks for the info. I also forgot to mention, that I bloat and swell up like I am about 5 months pregnant too. I heard someone with adeno say that happened to them, but I thought that was another symptom of endo. I dont knwo if the swelling is actually my uterus swelling, or just my abdomen filling up with fluid. It usually is about a week, 3-4 days before, then 3-4 days after I get my period. These last few months I am bloated pretty much all the time. I think I am getting worse

I can't dx you. And doctors try but can only definitively know that you have endo when surgery is done to "observe it" and even then it's hit or miss. Symptoms are pretty good indicators as to what you have. Discuss all of this with your doc and come up with the best solution for you!

Your symptoms sound almost exactly like mine - how old are you now - I'm 31 and had an LAVH 2 months ago for multiple large fibroids that were intramuscular.

I also had bowel problems up until I had my surgery and was pleasantly surprised to find that they vanished along with all the other nasties I was suffering. I didn't even tell the gaenocologist about my bowel problems because I assumed they had nothing to do with my fibroids but I think perhaps the largeness of my fibroids did impact on my bowel function.

You also sound like you have the same attitude to surgery as I did - I tried so hard to avoid it and went through absolute hell for a year before my second trip to the ER with severe flooding convinced me that I was heading to an early grave if I didn't do something to alleviate my chronic severe anaemia (I would go down to 6 after my period and couldn't get my hb above 8 even with iron injections and am now left with long term iron deficiency which will take years to recover from i.e. my hb has returned to 11 since surgery but there is still significant iron deficiency).

I'm ecstatic with the results so far of my surgery but that's just me - I think the secret to going into surgery with a positive attitude is to weigh up the problems you're going through now with the problems you may have after surgery.

Here's hoping the pill works for you but if it doesn't, don't spend the rest of your life sick and tired all the time.

regards
Xaviera