Endometriosis and Andeomyosis

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New Member

Date Joined Mar 2008
Total Posts : 4
   Posted 3/15/2008 2:40 AM (GMT -6)   
I'm 38 yrs old, overweight and my gyno has basically bullied me into my only option of Mirena to treat my Endo and Adenomyosis.  I don't plan to
become pregnant nor do I want children.  I've been suffering with various symptoms on a daily basis and these symptons were only lessened
while I was on micronor for about 6 months then the pain returned with a vengence.  I would prefer to have a hysterectomy because I am afraid
that the severity of the diease would invade my bladder and bowel.  I am aware that a hysterectomy may not completely help my symptoms
because I have scar tissue and implants in the adominal cavity.  I dont see how having a iud placed is going to reduce my pain when the trans
vaginal ultrascan was very painful. I can't even imagine what sex would be like b/c of the agony of tampon use. i think it would be easier for me to put the pointy little IUD through my uterus because of all the scar tissue.  I have a really tender abdomen.  My mood swings, pulling sensations, botherin my hip, chronic eye infections, bowel problems, uninary tract issues, I dont feel that I have been assessed by my gyno properly.  Maybe I should have gone in loaded for bear.  Usually keep a chart of my pain symtoms but I haven't in quite a while.  Do I have any other options or suggestions?

Regular Member

Date Joined Sep 2006
Total Posts : 213
   Posted 3/15/2008 6:01 AM (GMT -6)   
I've had both Endo and Andeo, but I had 3 kids in between.  I'm not sure what Mirena is, but I used Danazol to help with the Endo.  Fortunately the andeomyosis wasn't severe and was discovered during a hystreroscopy, so I haven't had any further treatment.  The hysteroscopy eased my periods immensley.
If you're not happy with the options your doctor has given you, how about a second opinion???
Good luck with it.... I had forgotten those horrible dragging pains until you mentioned them.
They say life is a bowl of cherries........... we just have to learn how to spit out the pips!

Veteran Member

Date Joined Dec 2007
Total Posts : 639
   Posted 3/15/2008 2:32 PM (GMT -6)   
Your doctor may have a reason for putting off a hysterectomy. In many cases, especially with a woman as young as you are, insurance companies are strongly opposed to hysterectomies and will not cover the surgery unless doctors can show that every other more conservative treatment option has been attempted. I would ask the doctor to explain his treatment plan in detail. Ask him to tell you exactly what he expects you to experience with the iud - specifically how much relief he believes you will get and how long it will take for you to see progress. Then ask him to lay out a plan of action for you in the event that this treatment fails - what all does he want to try, is hysterectomy a consideration, etc.

Good luck. I hope you get some relief for your pain.

Regular Member

Date Joined Jan 2005
Total Posts : 184
   Posted 3/15/2008 7:06 PM (GMT -6)   

I also have endometriosis, so I completely understand what you're going through right now.

Ryand is very correct that insurance companies can be reluctant to approve hysterectomies when the patient is fairly young and when all options have not yet been exhausted.

Have you asked your doctor why he/she is opposed to a hysterectomy?
Given the fact that you do not want children and that you also have adenomyosis, a hysterectomy will most likely give you much needed relief.  But, in order to make the endometriosis become inactive, both of your ovaries would have to be removed, thus cutting off all of the hormones that "feed" the endo implants.  Are you okay with a surgeon also taking out your ovaries, which would throw you into menopause?  If you do that route, there are various add-back hormones which can be added in tiny doses that may help lessen the menopause symptoms - such as hot flashes.
Have you had any surgeries for your endometriosis?  If so, do you know if your surgeon burned the lesions with a laser or actually excised them (or cut them out)?
The reason that I'm asking is because the excision method has proven to be the most effective at removing endometriosis.  When the lesions are burned, there is a high chance that the endo will return.  Unfortunately, only the endometriosis specialists actually excise the lesions.  It's still very common for Ob/Gyns to burn the lesions during surgery, and as a result, the endo quickly grows back after surgery.
I don't know if you live near any endometriosis specialists.  If you do, I highly recommend that you see one for a second opinion. 
Concerning the Mirena implant, it has shown to be effective in some women.  Only a few small clinical trials have been performed on the Mirena's effectiveness in endometriosis treatment, but the results have been promising.
The Mirena implant shouldn't hurt once it has been implanted.  (You may experience pain during the insertion process though, so you may want to be prepared for that if you decide to go that route.)  Women spot for about the first six months after the Mirena is implanted, but after that, the spotting lessens dramatically.
Potentially, the Mirena may help your mood swings by balancing your hormone levels.  It will depend on how you react to the progestin in the implant.
I know how intimidating doctors can be when they back us into corners concerning medications, but definitely speak up and discuss your concerns with your doctor.  Learn your various options and then possibly seek out a second opinion.  If you still feel that the hyst is your best option after you investigate your options, then see if your insurance company will approve it.  Ultimately, you know what is best for you and your body, so trust your gut instinct.
In a month, I'm traveling out of state to have surgery with an endometriosis specialist.  He will be excising my endometriosis, which has implanted on my ureters and bowel.  He will be aggressive in the surgery, and he actually did recommend a hyst.  I chose to not have the hyst, but I am hopeful that the surgery will help me otherwise.  I'm considering having the Mirena implanted after the surgery.  Before now, I've had six other surgeries for my endo, but in most of them, the surgeons only burned the lesions.  As a result, the endo quickly grew back - thus continuing the cyle of pain. 
Good luck in getting your pain and other symptoms under control, and good luck making a decision about what to do. 
Take care, and be well.
"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong.  Because someday in life you will have been all of these."  George Washington Carver

New Member

Date Joined Mar 2008
Total Posts : 4
   Posted 3/17/2008 12:47 AM (GMT -6)   
I have had my endo burnt off in 99. I'm Canadian and Native, I have the insurance coverage I need, all I have to do is wait for the surgury. I've already been having hot flashes and crawly skin feeling for two years. I already am peeing myself occasionally and have horriable bowel pain even sitting trying to work at my job makes me hurt. Birth control pills give me hell. Either i'm naseated for months only for the pain not to go away beacuse they cause ovarian cysts.The ovarian systs that i get make it more painful because of the scar tissue.

I have already done a lot of research on hysterectomies, my mother had one, so I know all of the risks involved. I've heard of women not getting the needed help from the mirena either. Since I've been on every B/C pill for the last 20 yrs, its not like I havent tried.

Its unlikely that he can operate on your urethers but youre bowel may have to be resected. That is what I'm trying to avoid is winding up with a bag of some sort.

I've got an appt w my gp tomorrow so I'll just have to discuss my issues with him. Its doubtful that i can have the IUD because of my migraines anyway. Something else I get with my period and/or right before it. I've got a laundry list of symptoms that arent listed here.

Regular Member

Date Joined Jan 2005
Total Posts : 184
   Posted 3/17/2008 6:50 PM (GMT -6)   

Hi Mskatzburg,

Sounds like you're making a good decision concerning the Mirena.  Good luck talking to your GP tomorrow.

I forgot to mention in my earlier post that endometriosis doesn't really "spread".  Recent research has discovered that a patient's endo won't spread to new areas.  So, if a patient doesn't have endo on the bladder now, it's highly unlikely that it will ever appear there. 

Thus, if you don't have endo in your bowel or other structures at this moment, you won't in the future either.

What can worsen over time, however, are those nasty adhesions.  As cysts grow and then rupture, and as the endo lesions bleed with each cycle, adhesions are very likely to form.  And, some women are more prone to developing adhesions than other women.

Fortunately, my surgeon does operate on ureters.  The specialists typically operate on the very risky areas, including the ureters and bowel.  In my case, the surgeon will remove the peritoneum off the ureter and then either place a stent or simply excise it if the endo hasn't invaded the lumen. 

With today's technology, it's becoming possible to operate on areas that were impossible to approach before.

Good luck, and take care.

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong.  Because someday in life you will have been all of these."  George Washington Carver

New Member

Date Joined Mar 2008
Total Posts : 4
   Posted 3/20/2008 3:40 AM (GMT -6)   
So basically if the endo doesnt spread then my best choice would be getting the hysterectomy.  All my endo has been localized to the omentum, unterus, right ovary with some on the left ovary.  I'll have to mention this to my doctor.  Then maybe I would be able to get my hystrectomy and actually be pain free for the first time in 28 years.  God, even some convicts get paroled.
Just a side note, I do know the complications from a hysterectomy.  I never chose to go with something that I havent throughhly researched.  I havent heard anything good about the mirena Iud.  Mostly that its more problems than its worth. 
One of my friends works as a social worker and a client just was hospitalized because her mirena iud broke a limb inside her uterus and impaled her. The client was in excuricuating pain and i think she had to be schduled for a hyster but i'm not sure.
I have no problem getting a hysterctomy. I know the side effects, i'll get hot flashes, blah, blah, blah.  I've been getting them for the last two years. And the crawly skin feeling that comes with menopause I can tell you waking up in the middle of the night and wanting to scratch your skin off.  I usually would just get up and rub some cream into to it and that would help.  I never was crazy about the idea of pregnancy. 
If my tonsils were inflamed that I would have them removed instead of spending years on medications to mask the symptoms. I just know that i've spent the last three days on pain medication and stoned out of my tree so I can function and still i have to make a consious effort to ignore the pain.

New Member

Date Joined Mar 2008
Total Posts : 4
   Posted 5/2/2010 4:28 PM (GMT -6)   
On April 27, 2010 I had the Mirena IUD inserted. It was excurciatingly painful. The next day I had an appt with my GP. I explained the pain, stabbing pain like I was sitting on a knife, Back pain from midback down into my feet, burning sensation in my right ovary or stabbing feelings in either my left ovary or right ovary while laying on my side, running for the bus and i peed myself, sensation of something sitting on my bowels, constant bowel movements. finally the pain and fatigue just got so bad that on May 1, 2010 my mom took me to emergency to have it removed. skull
My GP wanted to remove it on Wednesday but got overruled by my gyno's nurse. My GP's nurse had the nerve to say to me to consider the monetary value of having it removed. confused He mentioned to me the idea of Endometrial Ablation. That it should last me instead of hysterectomy until menopause. Any thought?

Regular Member

Date Joined Mar 2010
Total Posts : 132
   Posted 5/2/2010 7:40 PM (GMT -6)   
Oh, wow... I'm so sorry you have to go through all of this! A friend of mine had an endometrial ablation several years ago, and she's had a lot of relief from it. YMMV, of course, but it did seem odd that your ob/gyn didn't mention it.
DDD (4 levels- L2-3 thru L5-S1)

New Member

Date Joined Jun 2010
Total Posts : 1
   Posted 6/8/2010 10:26 AM (GMT -6)   
Has anyone considered Femara (breast cancer drug) as a suppressant combined with birth control? I have now had 6 surgeries for my endo and this combination has actually helped. FINALLY! I have been suffering since 16 and this has been my only relief!
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