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Adenomyosis - options Adenomyosis - options

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  #1  
Unread 07-28-2021, 06:57 AM
Adenomyosis - options

Hello,

I joined today. I was diagnosed with severe adenomyosis in Dec 2018. I have spent the past 2.5 years trying all sorts of treatments, herbs, trauma healing work, functional medicine, natural projesterone and then all sorts of different BC pills. The combined pill stopped the heavy bleeding and pain, but gave me a blood clot last week...(...so now i am back to heavy bleeding which doesnt seem to stop.

My uterus is twice the normal size. The intereventional radioalogist said my type of adenomyosis isnt suitable for a embolisation....leaving hysterectomy as only option.

I am so scared.........I am scared what my quality of life will be like after...I also have EDS- hypermobility....

but i cant keep bleeding like this either....
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  #2  
Unread 07-31-2021, 12:44 AM
Adenomyosis - options

I'm in a similar situation as you.
Hypermobile EDS, srroous adenomyosis with bleeding that never ends.
I developed anemia so severe, I almost died back in April of this year (2021).
I'm scheduled for robotic hysterectomy on September 7th, but I have so many concerns. I worry about my bad wound healing, how I develop keloid scars. I'm worried about pelvic organ prolapse, bladder dysfunction, loss of sexual function.
  #3  
Unread 07-31-2021, 01:17 AM
Re: Adenomyosis - options

Hi,
thank you for replying....i understand all those worries.....(((((..its feels really scary.....but can't go on bleeding like this either...
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  #4  
Unread 07-31-2021, 06:56 AM
Adenomyosis - options

  Quote:
Originally Posted by Radiance108 View Post
Hello,

I joined today. I was diagnosed with severe adenomyosis in Dec 2018. I have spent the past 2.5 years trying all sorts of treatments, herbs, trauma healing work, functional medicine, natural projesterone and then all sorts of different BC pills. The combined pill stopped the heavy bleeding and pain, but gave me a blood clot last week...(...so now i am back to heavy bleeding which doesnt seem to stop.

My uterus is twice the normal size. The intereventional radioalogist said my type of adenomyosis isnt suitable for a embolisation....leaving hysterectomy as only option.

I am so scared.........I am scared what my quality of life will be like after...I also have EDS- hypermobility....

but i cant keep bleeding like this either....
I had my hysterectomy in June for my adenomyosis and it was the best decision I’ve made. My uterus was the size of someone 18 weeks pregnant.
Recovery from surgery is no joke and way harder than I thought it would be but I feel so much better than before. Still have moderate twinges of pain here and there but nothing like the monthly cramps and heavy bleeding. My stomach is so much flatter without the uterus which is an added bonus. But there are things I didn’t realize my adenomyosis was affecting. Since my surgery I don’t have the bladder urgency and pain like I used to. I guess my heavy uterus was pressing on my bladder like when you’re pregnant. That’s gone! My son even commented on how I don’t have to pee all the time like I used to. I also used to get terrible lower back pain with my long walks. That is also gone. I honestly wish I had the hysterectomy years ago when my dr first suggested it. I just had to come to terms with not having any more bio babies, which in retrospect adenomyosis could have made it harder.
My quality of life is so much better than before even though I am still in the recovery phase. I was scared too and wanted to back out up until the day of the surgery. I am sharing this with you as I can so relate to your post. I hope you feel better, as I know the pain and bleeding with adenomyosis is so hard.
  #5  
Unread 07-31-2021, 07:39 AM
Re: Adenomyosis - options

I too had adenomyosis and I am 6 weeks post op, like Rochelle. Best decision I ever made. I never realized how much inflammation my big, angry uterus was producing and now I feel like a new person. All of my terrible gi issues are gone along with the bleeding and cramping. I had an uneventful and smooth recovery and found this recovery easier for me than a c section recovery. For me it feels like a long recovery due to being swollen and sore but the only real pain I experienced was from the gas used in the laparoscopic surgery and that was only for a brief time. Before my surgery I bled so heavy that I couldn’t leave the house.. Physically and mentally I feel like a new person. I wish you all the best!
  #6  
Unread 08-03-2021, 04:39 PM
Re: Adenomyosis - options

I don’t have EDS but I did have adenomyosis with heavy, continuous bleeding that lead to severe anemia. I tried everything, even embolization (which was not successful). I had my hysterectomy over a year ago and it was the BEST thing I possibly could have done and that’s after trying all of the supplements and IUDs (they fell out because of my enlarged uterus) and birth controls, and even the UAE. I was so scared, I worried about all the things you mentioned. I made a list of everything I was scared of…sexual dysfunction, quality of life, not feeling like myself, prolapse, anesthesia, recovery, bladder dysfunction. I had absolutely no issue with any of these things. My anesthesia was perfect, my recovery was better than I ever expected, my sex life is just as it was before, I don’t go to the bathroom as often as I used to, and I feel better than I have in a decade! I never had any depression or hormone changes. I had less recovery pain than I expected. I lost weight. My iron levels are coming back up. Just a week after surgery I felt so good, I realized how toxic my uterus was and how much it was really dragging me down.

I chose to keep my cervix because I had read that it helped with sexual function and also reduced the risk of prolapse. My surgery was done laparoscopically but I needed an abdominal incision also to remove my uterus. This was more to recover from but I don’t regret it. If you keep your cervix you have a risk (I think 12%) of having mini periods. In the 15ish months since surgery I have 3 episodes of spotting. It lasts about 3 days but is so light it’s just when I wipe and never in my underwear. It’s annoying but so minor it’s not really a big deal. Not having periods after so many years of brutally heavy bleeding and clotting is absolutely priceless! It took me a good 6 months before I stopped looking for/expecting to start bleeding again!
  #7  
Unread 08-03-2021, 04:47 PM
Re: Adenomyosis - options

I had my surgery in April. The surgery itself was so easy for me. In fact when I woke up from the surgery I felt a bit crampy and it felt like I had a full bladder. The nurse told me it was from the catheter and it would subside. By the time I left recovery I felt as if I had nothing done to me other than five tiny cuts that were covered. I felt great in the weeks after the surgery…..when I was released to have sex again at six weeks everything felt fine and healed. My only complaint is that since my surgery I struggle to orgasm…..where it came very easy before it is definitely a problem now. Unfortunately my doctor doesn’t seem to care. She gave every excuse she could for my problem……husband works third shift (he has done that for almost 30 yrs and it never caused a problem for us)…..I am in my 50’s so with age sex drive goes down (not a problem before the surgery and I was in my 50’s then), the stress of covid and homeschooling (again not a problem before the surgery). It was very upsetting to me….her solution was to watch porn and by a vibrator and suggested my husband try harder. Again the effort is the least of our problems. He does just fine in that area.

So all of that being said it has been very frustrating. I want to have sex, and it feels good, but I simply don’t orgasm like I used to. Where I once orgasmed every single time we had sex now it might be every 10th time if I am lucky.
  #8  
Unread 08-03-2021, 05:04 PM
Re: Adenomyosis - options

Hi ladies!
I feel for you. I am coming up on my third anniversary for hysterectomy. I had sever adenomyosis too. I bled constantly for a year. I also have EDS hypermobile. Crazy timing for your posts because I have just scheduled surgery for pelvic prolapse, argh! So, yes your fears are reasonable and so understandable. However, I am still so glad I had a hysterectomy and have relished the freedom it has given me.
I started having prolapse symptoms about 6 months ago. My prolapse was discovered during my colonoscopy for turning 50. I knew there was a problem but hadn't mentioned it to any doctor. As EDS patients, we are used to a lot going on and I just didn't feel like doing anything about it for a while. My symptoms are heaviness in my pelvic floor, back pain, SI joint pain, hip pain, bloating, and vacillating between constipation and diarrhea. I eat an extremely limited diet right now and I'm starting to get too uncomfortable to sleep. So it's time for the next surgery. I'm not thrilled about it but, as I've mentioned, I'm still grateful I had the hysterectomy.
The one thing I would do differently is I would have a conversation with my doctor about EDS before the surgery. I was a little ignorant of the potential for prolapse and didn't even give it a second thought. You are doing your homework and that is so great. I wish you all the best and love that my fellow EDS women are reaching out! We need the support!
  #9  
Unread 08-03-2021, 05:30 PM
Re: Adenomyosis - options

Understand your feeling after being in search for a way out for 2 years. My gynae had me on schedule for 2 years with me suffering for the 2 years.... and told me I needed to have a monthly injection for 5 months to shrink my uterus as it was too big to be taken out then. Well, I trust she has her reason as I was around my menopause years too.

I didn't have a life (had to cancel lunch and fun gathering, etc suddenly). Hence, I agree with many of the above, it is a fabulous feeling to regain life. Under pain killer medicines for months with doses increased, as you said, I found myself saying the same thing - I can't live like this. Hopefully you'll regain a life with needed treatment.
  #10  
Unread 08-03-2021, 06:08 PM
Adenomyosis - options

  Quote:
Originally Posted by Radiance108 View Post
Hello,

I joined today. I was diagnosed with severe adenomyosis in Dec 2018. I have spent the past 2.5 years trying all sorts of treatments, herbs, trauma healing work, functional medicine, natural projesterone and then all sorts of different BC pills. The combined pill stopped the heavy bleeding and pain, but gave me a blood clot last week...(...so now i am back to heavy bleeding which doesnt seem to stop.

My uterus is twice the normal size. The intereventional radioalogist said my type of adenomyosis isnt suitable for a embolisation....leaving hysterectomy as only option.

I am so scared.........I am scared what my quality of life will be like after...I also have EDS- hypermobility....

but i cant keep bleeding like this either....
Hey,

Sorry for what you’re going through.

I don’t have EDS, but my best friend does, so I feel like I can understand a little. You’d need to work out what’s best for you in terms of healing and resting and how that would effect you. If you would need some extra support, how the time off your feet would effect your body, things like that.

I had adenomyosis until my hysterectomy 14 weeks ago. It’s the best feeling being free from the pain and bleeding. I managed well living on my own with minimal support and healed well and quickly - I was lucky by the sounds of things! I couldn’t handle another trial option or leaving things as they were, and surgery has been the best thing. I’ve had such minimal problems!

If you choose surgery I hope it’s as good for you, and as smooth for you as it’s been for me!

Good luck!
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