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Unread 04-17-2002, 08:32 AM


I am new to this site and have recently been told by my OB/GYN that I have Adnomeyosis. I have been suffering with terrible bloating (feeling like I am going to blow up), irregular periods, etc. for 3 years. I previously went to another ob/gyn who kept giving me the run around & telling me that this was all normal. Even after a laproscope!! I recently went to a NEW female ob/gyn who said the best thing to do would be hysterectomy. So, I'm still in the deciding stages - I've heard all of the "horror" stories and it scares me! I'm already tired all of the time and my mood swings are not good - so I'm afraid that will get worse. Any advice?
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Unread 04-17-2002, 08:55 AM
Hi Chinney

Welcome to HysterSisters.

I am glad you have sought additional medical opinions for yourself. That is so important. It is amazing how many of us thought or were told that our symptoms were "normal" and we would just have to live with it.

I would like to really stress that the "horror" stories you have read are the exception and not the norm. Kind of like the 11 o'clock news they only report the one bad accident. They don't report the millions of people that made it to work with NO problems!

Many of us, myself included, had very smooth surgeries, no pain or problems of any kind in the hospital and excellent recoveries.
They also discovered adenomyosis which I did not know I had.

There are many helpful links listed near the top of this message board where you can further research your condition and possible options. Here is one:

Also, I would have your blood count checked out if your doctor has not already done so. Your doctor may want to put you on Iron supplements. Many of us become anemic which not only can make you tired but for me it seemed to cause the mood swings as well.

Good luck and keep posting.

Unread 04-17-2002, 09:01 AM

Hi Back And welcome,

I'm not sure what horror stories you've heard. BUt I had my hysterectomy 2 weeks ago and I'm feeling pretty darn good...except for boredom as I wait to heal. I too had adnomeyosis(bloating and all) plus numerous small fibroids(causing constant bleeding) and massive scar tissue on one ovary. THAT was my horror story.

There are no guarantees that everything will be great after surgery. But most of us do feel so much better after we have healed. In fact the numerous women I have talked to off this board said they wished they had done it sooner.

I don't know how old you are , but at 53 it was the best decision for me.
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Unread 04-17-2002, 09:43 AM

I have adenomyosis for three years, and this year my uterus doubled in size, plus it got worse, and that is what my doctor said it will only get worse. My uterus is the size of a 16 week pregnancy.

It doesn't get better, it is up to you and you should consult in your doctor more.

I want to fit back into my jeans, and my summer clothes, can't with this big belly. I don't want anymore pain, fatigue, beloatness, etc........

Unread 04-17-2002, 10:17 AM
To archide

I just noticed your signature has a list of your diagnoses, and from that and your post, I think we are sharing a body - it's word for word what my path and operative report said!

I had my TAH on 2/28/02, so I'm at about 7 weeks, and doing great.

Best wishes.

Unread 04-22-2002, 08:53 AM

I too have been diagnosed with this condition and it has been causing me pain for years. There is not alot of info. about on the net and my hyst. is May 9, 2002. I am scared and hope that everything will just be better. I finally won't hurt! When I visited my doctor after laproscopic and found this, I asked her first off, if this is not done will it get worse, she said yes. I did find that the main cause seems to be due to c-sections of which I have had 2. My second was a month early and my uterus was on the verge of rupturing it was so thin. This disease eats away at the muscle structure of the uterus as far as I can find out. I look forward to no pain, I also have severe migrains so I hope they go away too. Best of luck to you.
Unread 04-22-2002, 08:56 AM


I found this link in my search for answers: I lived with adeno for 12 years and didn't know I had it! As you can see by my signature, I had a lot of pain I was living with and didn't have too. Including 3 week periods a month, not fun!

Debbie, I cannot believe we are heading into our 8th week post-op! Hasn't it flown by??

Unread 04-22-2002, 10:16 AM

Hi chinney!

The best advice? Do what you are doing now. Ask lots of questions. Get informed. You will then be able to make the best decision for you. I see someone already put a link here to a site, you might also do a seach on 'adenomyosis' here in Hyster sisters. All the best to you in your searches!
Unread 04-22-2002, 10:52 AM
Pre-sacral neurectomy

You do not say in your post how old you are, so I don't know if this is relevant.

I am 43, and have been diagnosed with adenomyosis for about five years now. I got diagnosed while going through fertility treatments.

My doctor is fab, and somewhat of an expert in adenomyosis and it's affect on "younger" women - 5 years ago, not nearly as much info out there on this. We have the web and forums like this to thank for enlightenment.

Anyway, to buy me some time on the old biological clock, my doc went in laparotically, in Feb of 99, and severed the nerves between my spinal chord and my uterus. He told me they would eventually grow back, but I was pain free for two and a half years! I had previously been a vicodin/lortab fiend.

I was not able to conceive, but at peace with the time it gave me. I have a TAH scheduled for 5/6/02. I have not run into very many people who have had this procedure, so I always try to share it as an option.
Unread 04-22-2002, 01:38 PM

Hi Chinney

I was diagnosed with adeno last year after heavy bleeding but no pain. I was scheduled to have a uterine ablation this Spring but developed pain in Dec. I had a UTI in December and thought my pain was from that but was mistaken. I didn't accept my ob/gyn's recommendation for hyst after the adeno diagnosis and went for a second opinion to a urologist. Just got pelvic exrays back which confirmed I have gynecological problems, not urinary. I didn't think that the adeno would exacerbate in such a short period of time. If your adeno is limited to one section of the uterus, they can do a myomectomy. They take out that section and leave the uterus intact. Should you become pregnant, you'd have to have a c-section to prevent uterine rupture. Unfortunately, my adeno is throughout the entire uterine wall. I won't know it's depth until the pathology results come back after surgery (5/7).

For me, I'm nipping this in the bud before I become a statistic horror story. Like the other sisters have said, "the horror stories are rare". I've done enough research on endo to accept the fact that the disease just keeps progressing with hysterectomy as the final resort. Good luck in your decision.

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