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On the road with adenomyosis On the road with adenomyosis

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  #1  
Unread 10-10-2011, 09:38 PM
On the road with adenomyosis

After a couple of years with wacky cycles, pain, abnormal bleeding, painful sex, random pelvic pain, etc., I had a diagnostic surgery in March which revealed that I had adenomyosis. I had been trying to get pregnant and my doc did an ultrasound to realize my uterine lining was super thick, so adenomyosis was actually a welcome result compared to what she thought it "may" be. Honestly, it perfectly described all of the symptoms I had been having.

After the surgery I made a deal with my doc that if she kept me nicely medicated during my periods and allowed me to try Femara for fertility, I would give it a year then have a hysterectomy. Here I am only 7 months later in unbearable pain and making my decision a lot sooner. I simply cannot deal with this any longer. My periods are getting longer, heavier, and more painful each month. Chance of conception is minimal and I am truly happy with my 2 boys being the sum total of my complete family.

My husband is super supportive, especially because one of my symptoms is occasional pain during sex (that really bothers him). He's a doctor (anesthesiologist) and can get the time off and understands the details of the surgery well, so he views it somewhat clinically while easing my emotional concerns.

My OBGYN is like a sister to me and I have complete faith in her. I have an appointment with her to discuss the details of the surgery on Oct. 19. I've touched base with her staff already and there should be an opening on Nov. 16, but if not then, it will be the second week in Dec.

I really want to keep my ovaries, which shouldn't be an issue. But, I'm pretty sure she will want to take my cervix considering I've had precancerous issues before. I would like to take that out of the equation as one less thing to worry about. My only concerns other than recovery time are the potential to go into menopause sooner, even if I keep my ovaries and the potential for the vaginal cavity to be shortened too much, leading to painful sex. Other than that, I'm actually looking forward to all of this pain and blood going bye-bye forever. It's been a nightmare every month.

Anyone else been where I am now? How did the surgery go? Do you feel complete relief of symptoms now? Any new problems after the surgery? Just curious.
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  #2  
Unread 10-10-2011, 09:54 PM
Re: On the road with adenomyosis

I am going in for surgery this friday, just waiting for the insurance approval. Good luck with yours and I will letyou know how I feel afterwards! I am having the davinci total hyster with ovaries removed. I am hoping to be semi back to normal by the time you have yours done, so I can give you some feedback! feel better!
  #3  
Unread 10-10-2011, 10:01 PM
Re: On the road with adenomyosis

Hi Auterrific,

I did not have adeno...I had fibroids instead...but I am still very glad I decided to have a hyst.

In pre-op, my life revolved around my fibroids and very heavy periods...not to mention bladder incontinence, pelvic pressure and constant fatigue.

In my case....my hyst gave me back my quality of life.

Sending best wishes

Mary
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  #4  
Unread 10-10-2011, 10:21 PM
Re: On the road with adenomyosis

I had surgery July 20 for adeno and pre-cancer on my cervix. I kept my ovaries. I didn't have problems with heavy bleeding pre-surgery but I did have horrible cramping every day of the month. I am still recovering (a slow healer) but the cramping seems to be gone. My ovaries are definitely working and I'm not having hot flashes or anything like that. I do not notice any difference in the length of my vagina and the natural lubricant is still there. Orgasms are not the same, as I used to feel my uterus contract and of course that is now gone. It's very weird not having a period and since I didn't have heavy bleeding I miss it! I hope this helps :-)
  #5  
Unread 10-11-2011, 09:33 PM
Re: On the road with adenomyosis

Would love the feedback, butnpsher1.

Historylady - hoping I get back some quality of life as well. I think this has affected me more than I have imagined and for longer.

sugarandspice - I hadn't given any thought to lubrication or orgasms. Are your orgasms just as good and different or are they not as good because of the loss of contraction? Now I'm a bit concerned. I have a really good and active sex life and would like to keep it that way. One of the things that makes it so good is my husband feeding off of my excitement. If that changes, it could be difficult. Might have to head over to the Intimacy board and get more info on this.
  #6  
Unread 10-12-2011, 07:40 AM
On the road with adenomyosis

  Quote:
Originally Posted by auterrific View Post
sugarandspice - I hadn't given any thought to lubrication or orgasms. Are your orgasms just as good and different or are they not as good because of the loss of contraction? Now I'm a bit concerned. I have a really good and active sex life and would like to keep it that way. One of the things that makes it so good is my husband feeding off of my excitement. If that changes, it could be difficult. Might have to head over to the Intimacy board and get more info on this.
Unfortunately the orgasms are not as good for me. Sometimes it only lasts a second or two and I barely feel it. Other times it's stonger but I miss the internal contractions that go on for a long time. I was worried about this before surgery and spoke to both my gyne and family doctors. They both assured me the difference is negligible. I disagree. Sometimes it's very disappointing and sometimes I don't even want to try because I know I'll cry afterwards. But please keep in mind that I'm only 3 months post op. I'm hoping it gets better.
  #7  
Unread 10-12-2011, 09:20 AM
Re: On the road with adenomyosis

I am now one year and one month after my TAH. And I don't regret it for one minute. I'm only sorry I had to jump through all the hoops to get it done.

Gone is the pain (I didn't know how much pain I was in until it was gone) in my back, belly, hips. Gone is the monthly bleeding out for a week at a time. My iron level was so low that my DD (who is a lab tech) said I was "this close" to a transfusion. Gone are the huge blood clots and flooding out that no tampon or pad could hold. Gone is the foggy head and tired because I was so anemic. Gone is the expense of "feminine products" and finding the most absorbant tampon and pad available. Gone is the midnight flooding that drenched my pj's and sheets. Gone is the scheduling of anything around my period. Gone is carrying around a suitcase of supplies and a change of clothes. Gone is scheduling (yes scheduling) sex around my period and pain.

Now I have my life back. I have more energy. I have more time. I am more creative. I get more sleep. I'm not in pain anymore. I'm not foggy headed due to anemia. I can go on vacation (or out to a restaurant) whenever I want. And sex is great, we can be spontaneous - something we haven't had for so long I can't remember.

Things are different now, because I don't have my cervix, but I am so glad I had this surgery. Sex is great, different, but great.....

Let's see if I can put this in words.....

Some women, me included, enjoy the feeling of a penis "bumping" against the cervix during sex. Some women may need that "bumping" to achieve orgasm. Some women even feel uterine contractions with an orgasm.

Since my hysterectomy, I found out that I can achieve an orgasm even without my cervix. So it is still great, but different. .

The first time we had sex, it definitely wasn't a WOW (but DH said it was!), but it was fine. But there were a lot of emotions involved: I was a little scared - would it hurt, would I bleed, what if I'm not completely healed, etc. But it was different and DH said it was different too. He says that it does feel a little different because he can feel that I don't have my cervix, but it still feels great. Just like my hand is different, just like his hand is different, etc. Different, but still great.

But we discussed it and I pointed out to him that different is the new normal and we'll have to accept it. Just like when he had back surgery, we had to accept a new normal. I'm just going to consider all the fun I'll have learning to "have fun" all over again.

Do I miss my cervical/uterine orgasms? Yes, I do! But I also miss perky boobs and a flat stomach. But I love the new closeness to my DH, love being able to be spontaneous, love being able to travel. You get the picture. No more fear of pain, bleeding, losing a week (or more) every month because of the pain and bleeding. I'd definitely say sex is better now than before.

The other side is wonderful!
  #8  
Unread 10-17-2011, 08:24 AM
On the road with adenomyosis

Hey auterrific
I feel like I've been reading my story- same random couple of years trying different pills , ablation etc and now scheduled for TAH on nov 1. I have to admit I have such mixed emotions & nerves! Going for pre- op appt on wed oct 19 so hopefully have more info after that. I feel like ever since surgery was scheduled everything has settled down a little so just have such mixed thoughts! Praying you get all the info you need too- would love to hear how you go
Blessings
Yanny xo
  #9  
Unread 10-17-2011, 09:15 AM
Re: On the road with adenomyosis

you sound like you want more kids.
Please check into this before you make all your choices.
http://www.youtube.com/watch?v=Ga8XwXukiHg
It is Osada Procedure for Adenomyosis and many women are having children afterwards.
good luck...
  #10  
Unread 10-17-2011, 07:00 PM
Re: On the road with adenomyosis

  Quote:
Originally Posted by Luv2Hum View Post
you sound like you want more kids.
Please check into this before you make all your choices.
It is Osada Procedure for Adenomyosis and many women are having children afterwards.
good luck...
That's really cool. Thank you. Unfortunately, I have other issues with conception. The adenomyosis is just the tip of the iceberg on the fertility issue. I am 43 years old now and while I'd love another child, I am very happy with my two boys and I personally feel I don't want to be much older having a newborn. If I had no children, I would be all over this, though.
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