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falling apart, is anyone else? falling apart, is anyone else?

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Unread 09-07-2006, 08:59 PM
falling apart, is anyone else?

I had a hysterectomy 2 yrs ago at the age of 28 because of severe endometriosis. Since that time I have had seizures, been diagnosed with fibromyalgia, intercystalcystitis, kidney stones, hormones are out of whack and my doctor can't seem to get it straight plus, the depression, weight gain, breakouts, insomnia, night sweats, no sex drive etc. is adding to the on going increasing list of problems since my surgery. I feel like I'm going crazy. Is there anyone else having any of these problems. I know this is all related. I feel so alone, so robbed of my youth, so sick and tired of being sick and tired. To top it all off my endo is back in my intestines and bladder. I had my surgery for nothing. Will this ever end??
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Unread 09-07-2006, 10:31 PM
falling apart, is anyone else?

You've some list of troubles! Hardly fair to have the surgery only to have endo return. It seems many women suffer new ills after their hysts. Hopefully some of the
other sisters will have suggestions to help.What do the Drs. say about your seizures?
I've heard that magesium shortage causes kidney stones
I was miserable the first 2 years with some of your
problems. Bio-identical hormones were a tremendous help! (tri-est and progesterone). Insominia & night sweats almost vanished. Multiple muscle and joint pains--helped by acupuncture and SerraEzyme (from health food stores)-
I still think the surgery was the worst thing I could have
done. In retro--should have tried progesterone or a myomectomy.
Hope you recoup soon. Please keep us posted on your
Unread 09-07-2006, 11:36 PM
I agree!!

thanks for your reply. I definantly agree surgery was the worst thing I ever did. I am on a comound cream for hormones right now. It has estrogen, testosterone, and progesterone in it. It is still not working. As fas as the seizures go, they don't quite know whats going on. My blood pressure drops for no reason causing me to pass out and go into a seizure. I am on topomax right now which helps. Its hard for me to get further testing for all my problems because I do not have health insurance anymore because my husband switched jobs and now no other company will cover me because i have a pre existing condition!!! Anyway thanks for your support, Hugs shellsong
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Unread 09-08-2006, 01:04 PM
falling apart, is anyone else?

I am sorry that you're having so many problems. I can relate. There was a point where I was barely functioning. While I finally did get my hormones balanced, the rest of my body wasn't cooperating. Pelvic and abdominal pains, digestive issues, bowel problems, food and chemical allergies, a cyst on my thyroid gland, deviated septum, foot problems, and nerve damage are just a few of the things I have dealt with.

It's been a long process but I have learned to deal with the hand that was dealt to me. I am still looking for the ultimate solution, but have a good team of doctors that are looking out for me,I do have good days now. Accupuncture has been a lifesaver for me. I do still have bad days, I have learned to listen to my body, when it's shouting at me to rest that is what I have to do.

I don't know for sure what is or isn't related to the hysterectomy. All I know is that I cannot go back and change anything and don't regret the surgery. I have chosen to move forward and work on changing the future, whatever that may be.

in there and keep looking for answers. You're not alone in your struggles.
Unread 09-09-2006, 06:56 AM
falling apart, is anyone else?

I'm sorry to hear of all your problems, I would be willing to bet that most of those things are hormone related. I just wanted to let you know that I have had several seizures and several faining spells and they all started around 30 - the doctors never found out what was causing the seizures or the fainting spells, except that for some reason my blood pressure drops when I stand in one place for a period of time (the fainting) - so no long lines at the stores for me. The seizures, no reason, except I was in pain when I had them and I do feel very dizzy just before. I think this is no exact science for sure.
I wish you the best, keep trying to get those hormones balanced, you are so young to have lost your ovaries. Did they try to have you take nothing at the beginning to stop the endo? Hugs. Don't give up. Things will balance out.
Unread 09-09-2006, 08:42 AM
falling apart, is anyone else?

Thank you for you reply. It helps to know I'm not alone. My seizures are related to my blood pressure dropping. I'm on topomax which seems to help. As far as my endo, my doctor only did several laproscopes, which just created my adhesions, and more pain. They gave me the option of depo-lupron but I had taken depo-provera years before for birth control and had terrible side effets so the doctor said my body couldn't handle it. I had one ovary removed one year before my hyst. because a cyst ruptured in my tubed and my ovary was about to rupture, then one year later the same happened to the remaining ovary. Now its hormone hell!!!! I don't think the doctors here in louisiana know what there doing. Anyway thank you for your kind words and advice I really appreciate it. Hugs Shellsong
Unread 09-11-2006, 03:05 AM
falling apart, is anyone else?

I had my TAH in May 2004, due to severe anemia from adenomyosis and fibroids. I don't regret having the hyst as I would most likely be dead by now. That is how sick I was.I would literally hemorage out every month. I bled for 3 weeks every month. My blood count was 5.5 at the best part of the month. I have had a rough 2 plus years following the hyst.I had a large rectocele and enterocele that appeared a few months post op. I had them repaired in Jan 05. Last Sept. I had a cystocele repaired and a tvt done for stress incontinence. Now I have a 4cm trapped rectocele and another enterocele. I am having a abdominal sacral colopopexy on the 25th. I didn't have these types of problems (prolapses) before my hyst. I kept both ovaries, but within the first year I was quickly thrown into menopause. I went on estratest HS and it helped up until lately. I once again started with night sweats and the other symptoms.My Gyn moved me up to full strength estratest a couple weeks ago, but am still having night sweats.
I had my GB out 4 months post op
I had a 2 level spinal fusion 6 weeks post op from my second prolapse surgery. my back went out from the positioning during the surgery. MRI showed two herniated disc and bilateral nerves being impinged and facet arthropathy.The facet was removed during surgery.
carpel tunnel surgery on right, then left hand 3 weeks apart. both were severe according to the EMG
sinus endoscopy(sinuses full of infection and wouldn't drain) and septoplasty (deviated septum)this last April
numerous testing for different things, physical therapy for my back,steroid injections in my back, cortisone injection a couple weeks ago into my SI joint, which helped for a few hours.
Will be having PT to strengthen abdominal muscles to help with back pain once I recover from prolapse surgery. I may also have to go through pelvic floor rehab and biofeedback.Seeing a orthopedic dr for shoulder problems. Also have ddd in my neck. I have 4 protruding discs and small bone spurs.
The last 2 plus years have been a nightmare. I do think though that I neglected my body for so many years and it finally all caught up. I had back pain and tingling and numbness in my legs for a long time and just lived with it. The same thing with my hands. After having the hyst, which saved my life I decided to finally fix things. It really opened my eyes.
I do think having a hyst does lead to certain other problems, but I would go through it all again to feel as good as I do as far as energy level, etc.
Unread 09-12-2006, 12:04 PM
falling apart, is anyone else?


I'm so sorry this is all happening to you. It's a nightmare, isn't it?!

I went through a lot of what you are going through and I also went through a LOT of doctors to get where I am today. It's unbelievable how many don't understand how our bodies work overall and how interconnected each and every body part is. Many are not even aware that the ovaries are endocrine organs and do (or did) many functions outside of reproduction.

I noticed that you are on topomax and I'm wondering if your doctor discussed the fact that this can cause kidney stones (on your list) and also, that it can interfere with hormone uptake? Also, something to think about. . . our natural hormones, from our gonads (ovaries) help to regulate our cardio-vascular system, a fact many doctors are unaware of. (I found this out the hard way too.) It took a really informed cardiologist to point out to my other doctors that I NEEDED hormones for my heart, and that depriving me of them was the exact opposite of what they should have been doing.

What I'm thinking, is that if you are taking a medication that blocks the benefits of your HRT then shouldn't that be considered? Is it possible your doctor is overlooking this? Can you talk to him/her about this?

You sound a lot like me when I first started on this horrid, medical odyssey and I want to say a few things to you that I wish I had heard earlier. (1) It is not in your head. These are real, medical, physical side effects from hysterectomy/oophorectomy. Don't let anyone make you doubt your own sanity.
(2) You have a right to be mad and you are justified in your despair and frustration over having been led down the wrong path. Don't let anyone invalidate your feelings by making you feel like you do not have a "positive" attitude. What happened to you is real and it's a fact, and it's okay to be angry for as long as you need to be. I think it's important to be validated in our feelings about how this effects our quality of life. I think that when we give ourselves "permission" to feel the rage and anger that often accompanies this it's a good thing. It's a grieving process, and if we can't grieve the loss of our "own selves," then that's like saying we aren't important to anyone and that's not right. We are important and especially to ourselves!

A lot of people told me "what's done is done, move on," but I needed to understand what exactly had happened to me and what was causing all the changes in me. In order to do that, of course, I had to examine my history. The bottom line is that letting my doctor remove my organs was the stupidest mistake I ever made in my life. Obviously, it can't be undone, but I can learn from this mistake and hopefully, never make another one of that magnitude again.

Now I question everything and everyone when it comes to my medical care. Whenever a doctor writes a prescription for me, I check it out completely (you would be surprised at how many RX's I was prescribed that should not have been taken with other medications I was on) and talk to my doctors about them.

You have a right to feel like you do. You were robbed of your youth and you are plagued with complications . . . but you are NOT alone! There are thousands of other women like you out here and we understand. It won't be easy and it won't be a quick fix, but you CAN make improvements in your health. It's just going to take some time and some self-education, but you can do it!

Those of us who are a little further up the path will be happy to share what we find.

Big Hugs,
Unread 09-12-2006, 03:01 PM

After having my hyster/ooph. 17 years ago at the age of 34 I still am struggling to get a hold on my hormones. Up to about 2 years ago I was using the traditional hormones and felt terrible. I have the convulsions, leaky gut syndrome, IBS, CFS and fibromyalgia. The fibro started just about a year after my hyster/ooph. Since then it has been difficult. The past several years I have started using alternative therapies through a knowledgable naturopath. I am seeing the light at the end of the tunnel. I am currently using homeopathics for my hormone imbalance and I have been doing much better.

When I was on the bio identical hormones everyone had told me that there should be no problems-that is if you are not allergic to soy or wild yams. I was so sick -my skin was a mess etc.....now my skin has cleared up I sleep again and feel almost human.

I also have adhesions on my intestines that prevent me from ever having a colonoscopy-but for me I know that I am the type of person that produces scar tissue very easily so I have opted not to have them "repaired".

I wish you the best in your endeavors and hope that this may help you!

Unread 11-18-2006, 12:35 PM
falling apart, is anyone else?

I can relate, after my hyst I had depression/anxiety(bad) I never had these before. I tried every kind of hormone and finally feel the best emotionally I ever will, with the help of bioidentical sublinguals, estrogen/test./ progest.
The pain ,I am still suffering from, my hyst was in 2000.I had a lap in May and they found endo!
Take care and hang in there!

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