lots of questions

OK, here we are. I have lots of questions, and I can't talk to my Dr. for at least a month (I use the military form of health carem ) and I don't know who else to ask. But it is almost 6 a.m., my day is going to start within the hour whether I've slept or not, my nerves are stretched tighter than the catgut on Pete Sampras' racquet, and I have to ask somebody. Tag, you're it.

I'm thirty, have had severe dysmenorrhea since I was 12, have tried just about every hormonal treatment for birth control/pain and irregularity ever made (not only do they not work for the pain and irregularity, I couldn't even get them to work for birth control.) Every year I was in school I missed more days due to the pain and astonishingly copious bleeding than there are federal holidays - and back then they gave us a full week for Thanksgiving!

I have spent the last 8 years pregnant (I tell people that I'll be glad to leave my 20s behind as I was pregnant or had a newborn for almost the entire decade.) The good news is that yesterday I found a GYN that I actually won't mind going to again. He managed to do both speculum and pelvic exams while I was already in pain without causing me much in the way of additional discomfort. He is a keeper, which in the system I have to work in means he is incredibly difficult to get an appointment with. Oh, well. I guess you can't have everything.

He is also the first Dr. I have had who actually both listened to me, and believed what I said. He says I get a 30 on the endometrious (sp?) quiz, and the pain that feels like a guinea pig burrowing over my left ovary is not the first in his experience. I'm set up for an ultrasound on the 28th, and I'm supposed to see him again after that. In the research I have done since seeing him, I have found some really interesting things. Lots of anti-hyst sites, but I still have some questions. (I actually asked my Dr. if we could do a C-section and hysterectomy at the same time with my last baby, so you can see I'm not very sentimental about my reproductive organs.)

So, my questions are:
What are the MEDICAL benefits to keeping my ovaries and uterus, considering the fact that they don't and never have functioned as advertised, and a complete hysterectomy with HRT is the only way on earth I am going to get the right hormones at the right times in the right amounts.

How would my susceptibility to yeast and bacterial vaginosis be affected by a hysterectomy? I'm hoping someone will tell me that this particular nightmare will go away, but I have the feeling that unless someone can figure out a way to remove a vagina, there isn't much hope of that.

Since I've had PID twice already, if I keep any part of my internal reproductive organs, how will they be affected? In other words, if we decide to leave my ovaries in there, can they still get PID without the uterus to connect them to the vagina?

What are the pros and cons in your experiences in keeping the cervix? The way I figure it, if I don't have a cervix, I wouldn't have to have another pap smear ever (YIPEE!) But I don't know anything beyond that.

I'm sure there are others, but I think this will do for now. I am really sorry if the fact that I have five children is difficult for some of you. I do understand that some of us can't have any children, and that is hard. But it isn't exactly a bowlfull of cherries to be continually pregnant for a decade because they can't find anything that works - well, other than abstinence ( we didn't try that.) I don't know anyone who has done it who would recommend two babies 13 months apart - either for the mother's body or for the work afterward! I actually have a medical diagnosis of "hyper-fertility" because I got pregnant on Depo-Provera, in addition to several formulations of the pill. I would edit them out, but they are kind of an important part of the history of my uterus. I am sorry if it makes you sad, though.

Did your doctor mention the possibility of adenomyosis? That's a kind of endometriosis of the uterine muscle, and can account for heavy bleeding as well as pain. It's possible that just getting rid of that troublesome uterus and removing any visible signs of endometriosis could solve most of your problems and you won't have to mess around trying to take hormones. You could STOP taking hormones, which might be a big help with the yeast.

I'm not sure from your message whether your ovaries are giving you other hormone problems other than their interaction with your uterus. The medical benefits to keeping healthy ovaries are many and include bone density, mood, preventing hot flashes, keeping up libido--HRT doesn't really replace all the hormones in all the right levels that the ovaries produce and we don't even know what they all are. It does happen that the ovaries shut down temporarily or permanently after the uterus is removed, though.

Removing the uterus has all the risks of other major surgery. They also have to rearrange a lot of ligaments inside you to support the vaginal "vault" so everything stays "up" in there. Because of this, there's a long recovery from hyst. The 6-8 weeks rest at home is just the beginning, and you'll feel poky off and on for a good six months.

There's a lot of discussion about the cervix (do a search on posts with cervix in them). There's a risk of mini-periods if you keep it but there's less rearranging inside if you do and some people think there's a better sexual response if you keep it. But I didn't keep mine and don't notice a difference. Many doctors still take a pap smear of the vaginal wall even if the cervix is removed.

A lot depends on the ultrasound and on perhaps a diagnostic laparoscopy to see what's going on inside your abdomen.

I'm not sure about the PID issue. I didn't know it could come back after being treated. When you had it before, was it not treated successfully or did you get reinfected? I'm not sure if you can get PID again after hyst but you can certainly get other STD's.

I hope this helps. You have a lot to decide. You might look for the endometriosis association's Web site. And the public libraries usually have Mary Lou Balweg's book, "Overcoming endometriosis".

Good luck with your decision! all of the above is my opinion only; you should make a list of questions to discuss with your doctor.

Sorry it has taken me so long to answer you. I'm not having a good week, and I had to look into what you said.

As for my ovaries, they have never decided whose team they were on. On occassion, they have functioned like God programmed them, but for the most part, they have behaved like instruments of torture. At the moment, they are making my breasts make and leak milk. My youngest child is 13 months old, and I am NOT pregnant. There isn't a good reason for that.

As for PID, having had it once makes you very prone to getting it again. The treatment was complete both times, and the original chlamidial infection has never returned (I have only ever had one sex partner). I'm just lucky enough to be prone to it.

I don't take hormones at the moment. I have tried multiple formulations of the pill to try to treat the pain and heavy bleeding. I have also been on Norplant and Depo-provera for the same purpose. And the yeast and the bacterial vaginosis continue to plague me. I have never been able to bathe in nice things like Calgon or bubbles. I can only wear white panties, because even colored ones with a white crotch patch cause problems. I must use only Tide to wash my underwear, and the one time my mother bleached my underwear to get out the blood stains, I swelled up and turned purple. I was actually hoping HRT would give me normal hormones for the first time ever. Apparently not.

Thanks for your input. I have some other questions. Want to take a shot? Please? Could endo be what is making my belly so bloated and causing observable movement in there? It looks and feels like there is a baby moving around in there except that my belly is way too soft to be that pregnant. And I had a blood test last week, so I am positive I'm not pregnant.

Thanks so much!!

Teresa

Sounds like you need an ultrasound to see if there is anything that can been seen. Ask your dr about this. I had endo for years and I did not really feel anything crawling (not that I can remember) but it did cause a lot of problems with the bleeding every 2 weeks, bad back aches, heavy periods, etc. As for PID, I had that once and they caused such adhesions on both of my ovaries. I had D & C at that time. A month later I was sent to the emergency to be pumped with antibiotics. As far as yeast infection, I know non of this will cause any further problems in this area as far as I know. Hope I have helped you some. Good luck and keep on researching.

Dale

Yikes!

Well, your ovaries are nasty little things, aren't they? Not exactly the "healthy ovaries" I had in mind, so I have to reverse myself here. I would say take a look at the Hormone Jungle forum and see if the ladies over there are any worse off than you are now. Most people say natural hormones are best if you can make 'em, but there ARE a lot of women on HRT and many are doing fine and never go to the Jungle at all. You don't want to rip out ovaries that are doing their job, but if yours are making your life a living hell, that's completely different and you'll probably want to go over the pros and cons and your detailed history with your doctor.

Birth control pills certainly made my susceptibility to yeast a LOT worse when I was on them years ago, so it may be that if you get rid of your recalcitrant ovaries and get a steady supply of balanced hormones that are right for you, things MIGHT settle out for you. I had it bad--did the low-sugar diet, bleaching the underwear, microwaving the underwear (don't do it; mine caught fire); boric acid capsule inserts, the works. I practically lived in the drugstore. I know I can wear colored underwear now, post-Pill. I still have to use unscented detergent and I'm taking my you-know-what in my hands if I pour anything bubbly in the tub, but I'm much less sensitive than I was and can't actually remember my last yeast infection. I wouldn't count on it, exactly, but it's something reasonable to hope for.

Having obeservable movement in there sounds wierd. Maybe big, wiggly fibroids? Or your intestines have adhesions on them and move funny? All wild guesses on my part. Endo can certainly cause bloating, as can adenomyosis. I hope you'll see something in the ultrasound. Ultrasound will tell you if your uterus is enlarged or if you have some kinds of cysts, but it won't really show endometriosis, so don't feel bad if you don't have something that makes the ultrasound tech blanch.

One thing you want to be sure of if endo is suspected is that the surgeon is skilled in removing all detectable signs of endo from you during the surgery. My surgeon (for my last lap before my hyst) had a general surgeon on standby in case there was too much bowel involvement, but she didn't need him and it was all fine...except I had adenomyosis, too, as it turned out, so my symptoms didn't completely go away until I had the hyst.

Don't let anybody tell you that if they do a hyst the endometriosis will just die out.

I hope this helps. You do have some hard decisions ahead of you. I wish you every good thing and, if you go for a hysterectomy, a peaceful recovery.