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Upcoming hysterectomy: Adenomyosis Upcoming hysterectomy: Adenomyosis

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Unread 07-20-2014, 12:44 PM
Upcoming hysterectomy: Adenomyosis

Hi all, I was diagnosed with adenomyosis 2 years ago and almost had a hysterectomy then but decided against it. Couldn't cope with it emotionally as I have never been able to have children. Had 6 miscarriages and am now wondering if the adenomyosis made me miscarry? Can't seem to get any explanation of why.
I am an adoptive mum of 2 lovely kids and if I hadn't lost my babies I wouldn't have the beautiful kids I've got now
Anyway, here I am 2 years later knowing that I can't delay it any longer. My symptoms are so much worse - pain not only during my period but all the time. Also feel like my bowel and bladder are affected. Have pain on urination and flit between constipation and diarrhoea. I am so bloated (look about 6 months pg) and am so tired.
Having to wait until september for my op as my gyn is on holiday all of August!
Feeling more mentally prepared now, although I am still having the odd meltdown.
Just wondering how I will get through the next 10 weeks feeling so ill
Had a scan. As well as the adeno, I have 3 fibroids and an ovarian cyst.
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Unread 07-20-2014, 01:17 PM
Re: Adenomyosis

Hey, so sorry you went through so much pain and loss, my heart goes out to you! (((hugs))). But awesome you adopted, I'm adopted and it was a life saver! Anyways, I am pretty sure adenomyosis IS to blame, I don't know, but I had problems as well. I never had a loss but my first 2 pregnancies were fine, though my uterus was very irritable, especially second. My third, my waters broke at 7 months which was weird as my first 2 they needed to hook the bag and said it was a tough bag too both times. Thankfully we held her in through hospital bedrest and medicines but she still was a lte preemie. My 4th and last my waters broke at 5 month, even after progesterone shots since 4 months, maternal fetal medicine weekly and closely watched, plus I had 2 bleeds around my baby. It was crazy. My uterus was contracting every single day, every 1-10 minutes without mercy but we held him in with HUGE effort and I was always drugged up on magnesium and still kept getting rushed to the delivery floor every few days. My maternal fetal doctor from UW said that it could be adeno, but as I was pregnant they weren't going to investigate. I do in fact have it and like you it's getting worse as time goes by, had symptoms since the birth of my third though I tried to tough out the pain then, but after my 4th I couldn't handle it anymore. It's hard to not have answers but I think it was at least partly to blame. Huge hugs, hang in there and just try and keep busy until September!
Unread 07-20-2014, 01:49 PM
Re: Adenomyosis

Hi Bluebell65 -

I am so sorry you are dealing with this. It can be hard to have all of this going on and to have to wait a couple of months. And your meltdowns are normal, as even with all of your symptoms, this is still a tough surgery to contemplate and digest.

The best idea as ((Nimtherial)) said is to try to stay busy. Also, speak to your doctor about symptom and pain relief in the meantime.

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Unread 07-20-2014, 02:44 PM
Re: Adenomyosis

I used heating pads, Advil, tramadol, Benadryl to help sleep, never missed a hot soaking bath. And after sex took 2 Tylenol or Advil to help w cramping. I also used heat patches. I was in bed most of time , it can be miserable. I wanted mine done cause of daughters upcoming wedding and wanted plenty of recover time. Adeno sucks ;(

Advil liquid gels worked best. Also charted my cycle so I'd know when the good days were and I'd have less pain and I'd get alot of stuff done then.

My Dr wouldn't give anything stronger than tramadol, which didn't do much.
Unread 07-20-2014, 03:20 PM
Re: Adenomyosis

Thanks for your replies!
Georgiarose, I'm in bed every opportunity I get!
Pain relief is a problem for me as I'm an asthmatic. So I'm limited in what I can take.
Will try heat pads. I even carry a hot water bottle into the office! I drive a lot with my job which doesn't help.
I'm worried about taking time off work between now and the op as I know I will need time off later.
How long does it take to recover? I'm hoping to have an LSH so hopefully this won;t be too bad?
Unread 07-20-2014, 03:33 PM
Re: Adenomyosis

Initial recovery for me was 6 weeks. But it took some time before I felt I had my energy back. I had a TVH because was told some of the endometrial tissue could go down into the cervix. So they took it too, good thing, it was full of cysts and inflamed. Your welcome. Take all the time off you can. You can always go back part time and ease back into it. You may have an easier time w LSH, I had a TVH.
Unread 07-20-2014, 03:43 PM
Re: Adenomyosis

D'oh! I'm such a ditz, I can't get my head around all these abbreviations! No, I'm not having an LSH but an LAVH!!
Let's hope the surgeon has it figured out better than me
Hope you are ok now after your TVH
Unread 07-20-2014, 04:02 PM
Re: Adenomyosis

Thx. Okay then that's close to what I had. It took me awhile to regain my strenght cause adeno had me so sick. It's one day at a time and dift for all of us, I'm 45, but it's a major surg. I did alot of things laying down the first few wks, cause I'd start hurting. Take a long time for that to heal inside. You feel good and then do too much. Just be prepared and stay patient. you'll do fine. There's alot of support on these boards.
Unread 08-11-2014, 11:09 AM
Re: Upcoming hysterectomy: Adenomyosis

My sympathies for your losses! I found alot of great information on the Adenomyosis Advice Association's website and Facebook page. Even though there isn't a tremendous amount of research about Adeno from what I have read there is most certainly a higher risk of miscarriage. Sounds like you suffer from classic sypmtoms - I hope you find great relief with your surgery!
Unread 08-11-2014, 02:53 PM
Re: Upcoming hysterectomy: Adenomyosis

Thanks so much Joonbug x

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