Karol Ann Moore (kam0520) wrote in hysterectomies,
Karol Ann Moore


I am new to this community.  I was refered by someone in the womenhealth  community, so I just cross posted what I'd had there.

I honestly, just don't know where else to turn.  I am 24 years old, I'll be 25 in April.  I've been married for 3 years in May.  When I was 14 years old, almost 15 I had an ovarian cyst on each ovary, about softball size, I had emergency surgery to remove my right ovary because the cyst caused it to "twist" and basically killed my ovary, they had to remove my ovary and tube.  It started lapriscopically but they ended up having to cut me open, from navel to pubic line in a 'zipper cut'.  This surgery was more or less a hack job at the local childrens hosptial.  That doctor then referred me to an adolesent gynecologist.  I started birthcontrol and other various hormone treatments, my periods were so heavy and painful that I missed school and was basically bed ridden for my cycle, I was on Lortab the cramps were so bad.  This went on for about two years, finally on my 16th birthday, my doctor decided to do a lapriscopic surgery to basically treat what he thought was endometriosis and he was just going to do a quick, routine DNC.  Well, the quick surgery became an 8 hour ordeal.  There was so much scar tissue from my previous surgery he had to do 8 hours worth of surgery to just 'clean up'.  He told me then that he thought my right tube was still basically covered up with scar tissue and in order for me to have children, I'd have to have another surgery. 

I've had various problems off and on since then.  I still have very heavy/painful periods.  I've tried every birthcontrol known to man, I've done depo, the patch, desogen, low ogestral, ortho tri cyclen lo, just to name a few.  The depo did the best, until I started getting migraines, most birthcontrol gives me migraines.  

About a month ago, my husband and I decided we wanted to start trying to conceive, I stopped my b/c, my migraines went away, and we tried to conceive.  About 3 weeks off of the pills I started getting this horrible sharp pain on my left lower quadrant.  The doctor did a pap and gatherd other samples and found that I had some infection (mainly ureaplasma) which I have had in the past, so he put me in the hosptial and gave me IV antibiotcs.  I got better for a few days and it was back.  We tried oral antibiotics, it never went away.  So he readmitted me to the hosptial.  I stayed in a week this time doing an entire round of four or five antibiotics.  I got better, it came back with in 2 days.  He tried oral antibiotics again, flagyl, clindmycin 450mg 4 times a day.  It didn't go away.  

I am very overweight.  My doctor says he's "scared" to do surgery on me because of my weight, he says they'd have to invert the table and it would put pressure on my heart and lungs.  He's also worried it will become another long surgery based on how my last one went, he's worried that they'd have to cut me open again.  He advised us that it would not be good for me to try and get pregnant now either because of the weight.  I've been talking off and on with him over the past week about the possibility of doing surgery, he's concluded that there is either one of 2 things wrong, there is infection deep embedded in the adhesions from my previous surgeries, or, there is damage to my falopian tube.  If the latter is the cause of my pain, he said I could possibly lose my tube and or ovary.  If they could save the ovary, then there would be a possibility of being able to do invitro later on.  Then he said the worse thing I have ever heard in my life, but you should think about the possibility of a hysterectomy.  

I am 24 years old, I have been wanting to be a mother for so long, My body has been screaming at me that I want a baby for months now, and now, as soon as we decided to start trying, I'm faced with the possibility of it all being taken away.  So here's my question(s).  Where can I go for support?  Does anyone know anyone who has had to have a hysterectomy so young? Are there any groups online?  I'm going insane.  I'm so scared, and I'm TERRIFIED of a hysterectomy.  I'm so depressed now, I'm worried I wont be able to handle if I do actually have to have one.  I feel like, if I could just talk to someone that's been through this, if I could just, know I'm not the only person in the world that is going through this, maybe I wont go completely off the deep end.  

Thanks for taking the time to read this.

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I'm 35 and did have one child before I had my hysterectomy this year (I had my surgery the day after my 35th birthday and that SUCKED.)

I'm not sure how over weight you are. I'm 5'5" and 265lbs. I have had serious health issues in the past including anemia, asthma, a heart murmur, and I have high blood pressure.
There was no issue mentioned to me about my weight or my heart with regards to the surgery. I've never heard of someone having a hysterectomy because of an infection. I don't know antibiotics very well, but have they treated you for MRSA? I know that sounds horrible, but since it is a drug resistant bug, only specific antibiotics will work on it.

Have you been diagnosed/treated for PCOS? Your weight and cycle problems could be related to that as well. PCOS is usually treated initially with Metformin (which can help you lose a little weight but makes you very nauseous until you get used to it) and birth control pills, which it sounds like they were already using on you.
I get migraines when I'm in that part of my cycle where my estrogen is lowest and my progesterone is highest. This could be why BC gives you migraines. Most BC is progestin based. Have you tried an estrogen based BC?

I wish I could help you more.

FYI, There's a person who lurks on this group that is so ANTI Hysterectomy they spread some pretty scary lies about it. They stalked me when I posted the first time.
If you post more, I suggest you make it Members Only.
Thank you for the info! I'm 6ft and more than 400lbs. I do have PCOS, I've been down the metformin road before, but EVERY TIME we try it, it upsets my stomach so much I can't tolerate it. I have IBS/Spastic colon, and it puts it in overdrive. I'm trying to remember if I have tried and estrogen based b/c. I know at onetime instead of just taking bc we did a combo of aygestin (norethindrone) and estrogen. But it seems like the side effects (weight gain, facial hair growing) made me come off that. I've been dealing with this for coming up on 10 years and it's hard to remember all the meds I've tried. I don't want the hysterectomy if at all possible, but, I guess I'm trying to prepare myself as much as possible.
Do you have food sensitivities? Vitamin deficiencies?
Not that that's related to the reason you're getting this infection over and over again, there has to be something going on there. Are you prone to yeast infections?

I got the weight gain/facial hair when my fibroids started growing really big (the reason for the hyst). It was miserable. I can understand not wanting to continue on medication that did that to you.

I think the most frustrating thing for me (not related to the hyst, but caused part of the problem to begin with) is that so many doctors are pill oriented and not solution oriented. The WHY doesn't get researched nearly as much as the "take this and make the symptoms go away." You can't get rid of the symptoms permanently if you don't fix the WHY they're happening in the first place. I've walked out on doctors who have tried to give me drugs without trying to find out the whys of things.
I have Celiac disease, by the way, and had a bad candida overgrowth that caused IBS-like symptoms, mood swings, all sorts of fun stuff.

As far as your hyst question... I'd get a second opinion if you can. Find another doctor and sit down with them, tell them your history from your point of view without your records in their hands, then get an exam done.

I always recommend people get copies of their medical records. All 10 years if need be. So that you can tell the second opinion doc what's been tried.
No food sensitivities or vitamin deficiencies. Its just about guaranteed if I take oral antibiotics, I'm getting a yeast infection, but I've never gotton one that wasn't related to the antibiotic use.

It kinda seems like my immune system isn't quite at 100%. A few years ago I had to have a screw put in my foot because I broke it, well, the incision got severely infected, they tried oral antibiotics, it didn't work, they finally had to put a groshong catheter in my chest and I had to hang a bag of rocephin every day for about 6 weeks for the infection. I don't heal fast either.
Wow that really sucks. I definitely would avoid getting cut open if at all possible. Definitely get a second opinion and go see an immunologist if you can. Someone has to be familiar with folks like you. I know someone else who is resistant to antibiotics, but I'm not sure if she has any of your other symptoms.

I don't regret my hyst, and it saved my life, but I did research every alternative before I went with this one. Please do that. Talk to another doctor too, just to be fully covered.
"FYI, There's a person who lurks on this group that is so ANTI Hysterectomy they spread some pretty scary lies about it. They stalked me when I posted the first time."

I was just reading back through this community and I think I found this person...they posted all about heart problems as a result of hysterectomies and such? There are trolls everywhere. Sigh.
So let me get this straight. . .he says you're too overweight to operate to look for an infection, but he wants to do major surgery?? I'm sorry, but that just seems assinine to me (as a health care professional).

If I were you, I would get a second, third, fourth opinion. While I have had a hysterectomy (had it at 27), I am happy with that. Since you want to be a mom, if I were you, I would do it as an option of absolute last resort. This isn't a decision that should be made overnight nor taken lightly.
thats what we don't understand, how he thought it was just deep infection on monday, and on thursday it became him thinking there was damage to my tube on thursday. My mom really wants me to get a second opinion from her GYN, and I told her I'd give my doc til tomorrow (tue) to atleast call me back and let me know whats going on before I go to another doc. This doc is the one that is dealing with my short term disability paperwork, and he is the doc that i've seen almost 10 years and has all my history and has performed 2 operations on me. So I'm just a little, scared i guess to go to another doc, I've trusted him this long. We want a hysterectomy to be the absolute last resort, basically it's gotta be life threatening to me. IF he does go ahead and do surgery just to even look around, my husband and I are going to sit down and talk to both my mom and dad and let them know EXACTLY what we want and that way between my husband and both parents, I can have a voice even though I'm may be on the operating table.

I really appreciate your comments and concern. And I really appreciate the time you took to read my ranting.
First of all: Welcome! You are always welcome to rant as you wish.
Second: Second and Third opinions are ALWAYS a good idea. I know it feels like you're cheating on your Dr. after you have been through so much together and it's OK I PROMISE!! What would you want your sister to do (hypothetically)
Third: Hysterectomies are not that scary. You will be terrified going into any proceedure you may have, but I had to get one at 26 and everything has been better than I could have imagined ever since. No more pains, no more crazy bad periods, less drama, and overall less expensive since you don't have to spend so much $$ on pads, tampons, cramp meds, headache meds, bloating meds, you get the idea...

Have you ever considered adoption as the answer to kids? I did have 1 daughter when I had my hyst, but wanted 1-2 more. Even though I already had one, it was still a heartbreaking conclusion to have to come to about not being able to have more. I do believe that even if you have already resolved to not have any, it's still taking away an option--and I'm an options person! So my hubby and I have looked into adoption in the near future, but you do have some time to mull it over in your head and come to grips with it. Take your time, weigh your options, rant as much as you want on here, and *hugs*
thank you so much for the advice. I have an appointment tomorrow with my doctor to find out a little more, and depending on what he suggests, we may or may not go for the second opinion. My husband and I have a game plan of what we will and will not accept as far as treatment goes, and if he's not willing to accept that, then its off to another doc.
You are most certainly welcome here!

I was 20 when I had my hysterectomy, so it does happen to some of us when we're young, unfortunately.

That said, there are way more options than just jumping into a hyst. You said he did a Pap - but have you had an ultrasound, or a pelvic MRI? Seriously, second (and maybe third) opinions sound like a very good idea here.
Sorry to jump on the bandwagon so late, but I had my hyst at 26.

I have to echo what others are saying and find a new doctor.

Good luck. I hope things start working out for you, and soon.
Hi there my names verity i live in yorkshire uk i was 22 when i had to have a hysterectomy