Girl talk..everyone's invited, just doubt most men will be interested

OK, I know from being on here as long as I have that many of the women on here have troubles with their girly bits.

I'm having a whole lot of trouble, and have had almost ten surgeries now. It all started when I was twelve...so ten in 24 years isn't so bad I suppose. lol

I have had many cysts removed, often as large as canteloupes. usually I wait too long and because I'm active with sports, I tend to have them burst inside which causes all kinds of problems.

March of 2009 I had a right salpingo-oophorectomy and the surgery went very badly as my anatomy is wonky and the surgeon sliced a large artery that was not where it should be. The recovery was hell, as spilled blood intersticially can cause adhesions and result in a whole lot of pain.

Regardless, I have obviously recovered as I was well enough to train for and complete my half marathon in June.

I had some really painful periods and middlesmertz even when my phantom ovary was next up for ovulation. I had a lot of ovary pain on the right side for a long time even though my ovary and fal tube were gone.

My periods have been spot-on regular almost immediately following the surgery. No change except that they got more painful.

I've now missed two periods in a row.

I'm having pain, but it's nothing compared to my head so I tolerate it well.

My ultrasound on Monday, though I've yet to get the results, didn't go well. The tech found many things to measure and note mostly on my right side, where there is no anatomy left for her to referance.

I know the rules about talking to me, but usually the techs will fill me in cus of what I do for a living and my extensive history with issues. This one was tight as a clam and would tell me nothing. I clearly watched her measure some calcification which has me concerned as I've never had dermoid cysts in the past so I doubt I'd start now.

I'm not worried worried, but I am worried.

I'm 36. I suspect a total hyster is next for me. I'm scared yet ready to do it. What do you guys think?

milo wrote: I'm scared yet ready to do it.

Sounds like you have a realistic grasp on what might happen. Preparing yourself for worst case scenerio is not a bad thing, especially if you can keep calm about it and rationalize like you are. I commend you for your strength, Milo.

Then again, maybe this technician has a personality of a 2 by 4, or really hasn't seen anything noteworthy.

Ultimately, you will have to wait and discuss with your doctor and the wait is maddening.

Hang in there girl. Big hugs. This will be a memory soon.

No, there is definately something up, it's just what that I'm not yet clear about. I know the routine like the palm of my hand.

I hate waiting for results. I suppose I could call the x-ray and see if they will cc me a copy. hmmmm

waiting waiting waiting....ugh

Typical history starting at age ten...ovarian cysts, mettelschmitz, Put on pill at 14 to control ovulation and cramping and to keep from missing so much school with heavy cramping.

Had one ovary removed after a very large cyst caused torsion of the fallopian tube and strangled the ovary ( my "ten" on the pain scale). Then another emergency oopherectomy when the remaining ovary started hemorrhaging from a cyst. They took the uterus out at the same time. I was 29

I had two kids, one conceived with both ovaries, one conceived with one. When I want to play the guilty mother game I wonder if my youngest sons rare genetic handicap is because of a wonky egg from me. I try not to go there too often...

The hysterectomy biopsy revealed I had adneomyosis. Honestly, I have felt so much better since it's all taken out, even though I have a zipper stomach and I think that is the cause of some of my back pain.

But, I don't have any cancer or heart disease in my family and am perfectly comfortable taking HRT to keep the misery of menopause at bay ( some people have mild symptoms, the women in my family go psychotic). I did go off HRT to see if it helped with the m's but it made no difference. Plus, I'm on a patch so I have a even level of hormone, not fluctuations which many Drs feel is the culprit.

Sometimes I still have pain from adhesions, but nothing noteworthy ( especially in light of our heads!)

I'm fifty now and glad I have not had to worry about this for the last 20 years!

What do you think they've uncovered? Hugs, Dear Milo.

I've been very fortunate to be able to count on one hand how many times I've had cramps from my period (I'm 49). I suspect not having those cramps is why labor was so horrificly painful for me. I've given birth twice and I still haven't gotten over that pain. (22 years ago) ;-)

Is it possible to have phantom ovary pain? You know how amputees have phantom limb pain?

I so envy you Leslie. I suffer terribly every month and always have. In addition to the raging uncontrollable migraines I get then, the cramps are horrific. I take prescription strength ibuprophen and hug a heating pad for 3 days. Sometimes I'd swear someone is stabbing me with a knife. I tried BC pills, but they raised my bp so I had to stop. You'd think as migrainers we wouldn't have to put up with other painful conditions. There should be a limit as to how much we have to endure. lol

Brenda, Milo and the rest...

My neuro is currently looking at a link to Ehlers Danlos Syndrome, a connective tissue disorder. It would explain my headaches, backaches, and menstrual difficulties. Another member of Rondas put me in this direction.

I firmly believe my mother passed from the vascular form of EDS.

I'm seeing a rheumatologist about it next month.

I found a EDS forum very similar to ours where I'm getting a lot of info, not just the standard lists.

Awww, sweetie. what a load to go thru besides M. I am so sorry for you, and sympathize with you, too. {{{hugz}}} {{{hugz}}}{{{hugz}}}

Well, it's so hard, but no matter what you do -you gotta do what you gotta do.
Obviously, you don't have much of a choice if it turns out the "hyster" is what is needed.

But, you don't know for sure until you speak with your Dr, so let's not worry prematurely.
I hope it won't come to that.
I'll be keeping my fingers crossed it won't be neccessary, at least not yet.


Risa

I'm so sorry that you are so ill and pain. Praying, that all goes well at your doctor visit.

I'm 41 now..had a complete hysterectomy when I was 30 due to endometriosis..Before I had the surgery..passing blot clots the size of lemons..sorry, to be graphic.. Every month when I did have my cycle I was vomitting and had awful cramps..missed about 3 days of school every month..Glad it's gone..don't miss the pain.

Thinking of you and wishing all to go well. Again, I'm so sorry about your suffering.

blessings,
greeneyes

Milo....

Your title was indeed intriguing. I'm sorry I have no practical advice or experience.....but I hope you and your docs can make the right decsions, and whatever needs be done is done well, and you recover well.

Best Wishes!
-mgb

Girlie parts can be troublesome, can't they?

I had an hysterectomy three years ago. Because they did not know that the "biggest fibroid we have ever seen" was actually a malignant tumor I did not have a radical hysterectomy and therefore still have my ovaries. They are floating about in there somewhere.

Due to the cancer I have to have scans done every six months. I alternate MRIs with ultrasounds. When I have the ultrasounds they can never find the right ovary but they sure take a lot of measurements. Also, I have a lot of pain on that side and always have. On the verge of TMI, I swear that sometimes during intercourse it will feel like a knife has been jammed in and twisted on that side. No good explanation for this. Never has been. I have had this inexplicable pain for over 15 years. Sometimes it just knocks me to my knees walking.

They did an exploratory laproscopy when it initially got bad. I had an abdominal hysterectomy and they checked everything. No reason ever found but I still have this pain.

I offer this story as an example of "it very well could be nothing." Don't fret yet. Nothing is going to change by that. One thing being told I have cancer did for me is to confirm, "If I can't change it there is no use in thinking/worrying about it." Just live with it like you have until you know more.

Good luck.

Believe it of not, I've not been spending much time worrying. I knew my fate in this regard many years ago and was clearly told I woudl likely have surgery every one to two years.

I went and got my results on my own.

The lonely remaining ovary is greatly enlarged and has a large cyst in it as well. I'd be less concerned at this point if I wasn't spiking a fever every eve.

OK, so I left out several symptoms, but one is bugging me so much right now and I need suggestions on what to do with it.

I've not had a formed stool for at least two months now, and I go to the bathroom (BM) anywhere from 20-30 times a day.

Needless to say....my butt hurts!!! A LOT!!!! I do not have hemmorhoids but now my butt is so excoriated that I bleed and am in intense pain every BM.

I had tried zincofax with limited effect. Today, I'm at work and it's hurting so much that I jumped down to pharmacy. I bought anusol plus but it's for hemmorhoids and so far hasn't helped at all.

Any suggestions? I've already done the lab testing so waiting on results from that.

Milo,

I sort of experienced that when I had ovarian cysts - not to that level (you poor girl). I sort of had a thought as I have a dog with similar issues but the medication (metronidazole) can cause serotonin syndrome in humans. I just know it had a steroidal effect that can cause things to firm up. Just was thinking if things could be "fixed" upstream it might solve the problem at the end.

I'm so sorry - I have no suggestions for soothing that.

I'm going to take out my magnesium sups from my concoction tomorrow for a few days to see if that helps with the BM's.

When I had my oldest son they still recommended sitz baths. They really helped. I continued to use them when I had other problems down there. Use the water as warm as you can possibly stand. Also, you might try using good ol' petroleum jelly for a while. It doesn't wash away with perspiration or watery BMs.

Here is a general link

http://www.howtodothings.com/health-and-fitness/a4540-how-to-take-a-sitz-bath.html

I hope this helps for you. I understand your discomfort. Before my hysterectomy I had the same experience and I frequently do during migraines now.

Poor Milo, we are on the exact opposite spectrum. I was thrilled a couple weeks ago when I found little finger " rubbers" at the pharmacy so I can literally pull the BM out myself since nothing is moving. I ran into a nurse friend and she kept poking my bloated tummy going " oh, that's not good".

We can't win!!! Imagine if we had these tidbits on our FB. On top of that the hemorrhoids...

But, I tried to go out to dinner anyway with friends and was accused of being rude because I was so quiet. I'm not going to mention what I'm going through as dinner conversation. Oh, we're a sad lot tonight....

Milo,

For runs try fish oil - had moderate to fair success and an orange a day, either whole or juiced. The orange seems to have the best effect. My record was 27 times in one day within a four hour period. Talk about full of "it".

Well it's my fourth day off of magnesium, and I've been having really, really bad migraines. I'm also due for botox this week along with the facet blocks.

My stomach has not settled with the stopping of mag.

I've reviewed my lab work online and there are "issues". I still haven't heard from my doc though I've reviewed all my own results.

Today I have really bad abdominal cramps. I'm also leaving the house in the morning in loose fitting clothing and by the time I get home my abdomen is so swollen that the pants or skirt are cutting into my skin.

I'm watching what I eat so closely so that I don't gain any weight, as the abdominal swelling is already so bad.

Last night my head was so bad that I was in tears half the night. I also dropped 800.00 on my next botox shots. I get them on Friday...thank god.

I'm not suicidal, but boy do I have some thoughts of sadness going on right now. I'm not in the least bit depressed...just get so down when the head starts up.

On a positive note...that once in a life-time training is started and I'm sailing through the course work. My first in-class seminar didn't go well for my head but was good anyways.

I also have a new medical student starting will me and she is a dream to teach. My med-student karma has been really good lately.

This sucks... I had a hysterectomy and one ovary removed when I was 30 as the ovary was doing something very wonky and unbelievably painful. I was on complete bed rest before the surgery because ANY movement caused the ovary to spasm. OUCH! My uterus was prolapsed so rather than have another surgery and since I was done having kids, it was a relatively easy decision to take it out too.

I have never regreted having a hysterectomy at such a young age. I have some pain once in a while from adhesions but nothing that even come close to the pain I was in prior to surgery.

I can't tell you what to do but that was one of the best things I ever did for myself. I was in horrible pain and now, no periods, no cramps, no PMS... It's good to have an abscence of pain in at least one part of my body.

I hope it all works out the best for you whatever you decide to do and the other issues mellow out.

I've argued for a hyster since I was about 20 and noone was willing to do it for me.

I'm swelling in the abdomen each day now and I'm starting to look preggers. I'm also in a lot of pain now.

I'm frustrated with this all.

On the bright side yet again...I have a fabulous student working with me and she can take over much of my work.

I had the same problem Milo, I knew I needed a hysterectomy, I had had nothing but trouble since I started my period when I was ten. But, no, first one emergency oopherectomy, then the hysterectomy, then a second emergency So, three surgeries instead of one.

They kept saying I was too young.

Do you have the results back yet? Did I miss that? What's taking so long?

Yes, the ovary is enlarged and I have a growth in it/around it.

I called the surgeon direct today to try to backdoor myself in but her receptionist wouldn't agree to book an appointment until my GP had referred. So I am seeing my GP on Friday to see what the hold-up is.

The pain is new....I was doing ok but now I have a lot of swelling and it's hurting a lot, so I guess I'll need to deal with it sooner then later.

I don't understand why when there is so much pain and repeated surgeries that doctors are so reluctant to do a hysterectomy. Most women KNOW whether or not they want children. Having a successful pregnancy is hugely difficult when you have these issues and surrogacy or adoption are always an option. The decision should be the patient's, after some good counselling and realistic views of the future.

Besides the pain and misery caused by the cysts and fibroids, you know that the hormones are already screwed up so using that as an excuse not to operate when it is clearly the best thing to do just isn't right.

Where do you find these gynos that are not knife happy? I have never had any problem finding a doctor that wanted to do a hysterectomy. I actually fought them about it for 12 years before I agreed to it. I still wish I had not agreed. I kept my ovaries and one of the doctors I see still tries to talk me into having them removed each time I see him.

My oncologist says to leave them and when I have a recurrance we will "fry them with radiation".

I am sorry you are in so much discomfort. If you and your dr agree an hysterectomy is the right choice for you, I wish you well. I do caution that I know a LOT of women that it did NOT cure their pain issues. Mine did help with some of the diarhea issues, though.