Proactive Hysterectomy? (loosely diagnosed via transvag ultrasound with adenomyosis)

Hi ladies!

I'm 37 and I've been loosely diagnosed (transvag ultrasound) with adenomyosis. It is diffuse and my uterus is somewhat enlarged and heterogenous. My cycles have been getting weird, and I had the ultrasound done due to symptoms including shorter cycles (went from 28-30 days to now 23-25 days), several days of spotting before a full period start, with lots of cramping and heavier bleeding/small clots, followed by several more spotting days. I have mild to moderate cramps multiple days of the week, back pain as well, and intermittent sharp stabbing pains on both sides of my lower abdomen. On top of that, I have bloating/gas on a daily basis which doesn't appear to be related to diet at all. Lastly, I had my first experience with mid cycle spotting (about a week before my actual period started) with sex. None of these symptoms stop me from functioning, working etc, but they suck and it's annoying and uncomfortable. I've been through food allergy testing and several GI tests with no definitive results because of the co scant cramping and bloating.

My doc said the same as many of yours, that he feels it's adeno and we could try BC, ablation etc, but those are not very effective (and I hate invasive procedures to begin with) and a hysterectomy is the only cure.

I've literally spent hours on this site over the past two weeks (thanks for all of your stories and experiences!!) and have decided to go for the hysterectomy. My reasoning is that the pros outweigh the cons: no more pain/bloating, no more periods, no chance of uterine or cervical cancer, no worries about adeno worsening or ending up with other fun stuff like fibroids and uterine prolapse and my ovaries are great, so no menopause from surgery. I also have two kids and no intention of having more!

So my question is this...am I crazy for being proactive about doing the surgery to prevent worsening symptoms or problems? When I read the posts on here, most ladies have far worse symptoms than I have, but many also say that they waited too long and wished they would've done it sooner, or that their pain and bleeding got soooo much worse. I really don't want to get to that point!

So has anybody else gone for a hysterectomy before they actually felt they HAD to do it?

Thanks so much!

This is what I'm doing. I'm 30 (will be 31) and am going for a hysterectomy to take care of endometriosis and painful cycles. I also have PCOS, but I'm keeping my (however dysfunctional) ovaries. The doctor wanted to give me a whole bunch of different hormonal medical options, but I told him I didn't want to take any more medication than necessary. I'm done having children, so this seemed like the best course of action for me.

So I haven't BTDT, but I'm in the same boat.

One might say that I had a proactive hysterectomy too. I had a lot of fibroids, but no bleeding or serious pain, although bladder pressure was a huge issue for me. I could have taken a wait-and-see but nothing was going to change. I also looked into the embolization procedure to shrink the fibroids but heard it was painful and there was no guarantee it would work. So I just decided to have the hysterectomy and get it done. I did keep my ovaries. I wanted to keep at least one (I was 40 at time of surgery) and didn't want to go into immediate menopause. My ovaries weren't in great shape but my doctor was able to save both and I am happy with the result. I think being proactive is a good thing since really, these issues may only get progressively worse. But if you are unsure of what to do, certainly take the time you need to feel comfortable with your decision. Wishing you the best of luck!

Hi! 😊

I'm 38 and am having a hysterectomy for adenomyosis as well. I tried the IUD route but the hormones were intolerable for me.

I do sometimes second guess my decision briefly but remind myself that my decision is based off of a quality of life thing. I cannot go on bleeding like I do every month because it controls everything I can do during that specific week. 😢

I think being proactive in cases like adenomyosis is a good thing. I know mine is not getting any better so I'm in the camp of ladies who say that I probably should of done this a long time ago, but I'm not on the other side of hysterectomy yet.

I think its normal for many of us to weigh our options and second guess but ultimately, you need to be at peace with whatever decision is best for YOU.

Hope this helps a little!

I am 45 and I had a hysterectomy on 5/24 (kept ovaries) because of a large uterine fibroid, heaving bleeding and anemia (that was not responsive to iron supplements - and now I know why!). I was diagnosed with adeno from the pathology and my doctor said it absolutely had to be done - it would have just gotten worse and worse. If you are not a candidate for other procedures hysterectomy is the only cure for adeno.

I am 46 and I had occasional clots between cycles and started to have bladder issues and probably had constipation issues I really didn't think much about. These are issues I could have lived with since I really didn't have pain. I was given the options of wait and see, myomectomy, UFE, and hysterectomy. With the wait and see I wasn't crazy about this option since my fibroids could just get bigger and there would be a chance that the surgery could not be done laparoscopically. The next two options could allow my fibroids to grow back, so just seemed temporary to me and I did not want to have any additional surgeries if I could avoid it. I opted for the more permanent solution of a hysterectomy. It was discovered in my pathology that I also had adenomyosis. This could have been the reason why my insides felt like they were going to fall out prior to my cycle starting and on the first day. Thought it was all normal and it was only a couple of days, so didn't think it was out of the ordinary.

You just have to weigh everything and be good with your decision.

I had mine for bleeding and hyperplasia. I had had an ablation and tried a couple of different meds. My primary was smart about encouraging me when i was doubtful. I have a family history of of uterine and possibly ovarian, do it now before you get anemic and feel worse. Once i had it i was happy, I didn't realize how badly I had been feeling.

	Quote:
Originally Posted by Jealkema Hi ladies! I'm 37 and I've been loosely diagnosed (transvag ultrasound) with adenomyosis. It is diffuse and my uterus is somewhat enlarged and heterogenous. My cycles have been getting weird, and I had the ultrasound done due to symptoms including shorter cycles (went from 28-30 days to now 23-25 days), several days of spotting before a full period start, with lots of cramping and heavier bleeding/small clots, followed by several more spotting days. I have mild to moderate cramps multiple days of the week, back pain as well, and intermittent sharp stabbing pains on both sides of my lower abdomen. On top of that, I have bloating/gas on a daily basis which doesn't appear to be related to diet at all. Lastly, I had my first experience with mid cycle spotting (about a week before my actual period started) with sex. None of these symptoms stop me from functioning, working etc, but they suck and it's annoying and uncomfortable. I've been through food allergy testing and several GI tests with no definitive results because of the co scant cramping and bloating. My doc said the same as many of yours, that he feels it's adeno and we could try BC, ablation etc, but those are not very effective (and I hate invasive procedures to begin with) and a hysterectomy is the only cure. I've literally spent hours on this site over the past two weeks (thanks for all of your stories and experiences!!) and have decided to go for the hysterectomy. My reasoning is that the pros outweigh the cons: no more pain/bloating, no more periods, no chance of uterine or cervical cancer, no worries about adeno worsening or ending up with other fun stuff like fibroids and uterine prolapse and my ovaries are great, so no menopause from surgery. I also have two kids and no intention of having more! So my question is this...am I crazy for being proactive about doing the surgery to prevent worsening symptoms or problems? When I read the posts on here, most ladies have far worse symptoms than I have, but many also say that they waited too long and wished they would've done it sooner, or that their pain and bleeding got soooo much worse. I really don't want to get to that point! So has anybody else gone for a hysterectomy before they actually felt they HAD to do it? Thanks so much!

I could have written this post!! I was diagnosed with adenomyosis after having bladder issues (nighttime bathroom trips, frequency). My doc said my uterus was "boggy" and adenomyosis on the u/s. That was last year. I have been having every single symptom you listed, along with lower back pain and tingling/numbness down one leg.

I've also been having pains only in one ovary every cycle during ovulation. I've never been debilitated but it's getting worse. And the gas and digestive problems during my period are just embarrassing!!

My LAVH is scheduled for 7/13. I'm counting down the days. I've had 4 kids and am 42. Like you I've been wondering if I'm being too hasty, but I'm worried my symptoms will just get worse and rob my family of the active person I am. Based on family history I could have another 8 years before menopause hits!

Last night and today I had the worst bleeding and cramps I've ever had. Just affirmed my decision.

So glad I'm not the only one!

Thanks for all the replies! I'm glad to know some of you are doing or have done the same thing with your hysterectomies, makes me feel better. I really don't want to get to the point of being miserable all the time and I'm hoping to do be able have a TVH, so I'm afraid waiting too long could limit me from that option as well. I don't meet with my doc till next month, so we'll see!

Hi,
I too was diagnosed with adeno a few months ago but unlike you, I have had periods that have been sporadic over the past 4 yes. They would come once in 80 days, 64 days, 12 days, practically whenever it felt like it. Bloating is unbearable as I am not able to wear anything with a button or zipper, I am constantly tired although I take iron pills daily. It's frustrating to me that I can't be intimate with my fiance without knowing what may happen. My hormones are so out of balance when I am on my cycle that my child stays as far away as she can to not to feel the wrath. Since Dec 2015, whenever I have a cycle I can go through an entire box of tampons in less than 24hrs. I welcome the surgery and have started calling it my second birthday. Reading posts in the forum where women finally can be normal is so liberating! My surgery is scheduled on 7/11 and if you ask me, I wish I would have been given the option to have it sooner than this.



]Hi ladies!

I'm 37 and I've been loosely diagnosed (transvag ultrasound) with adenomyosis. It is diffuse and my uterus is somewhat enlarged and heterogenous. My cycles have been getting weird, and I had the ultrasound done due to symptoms including shorter cycles (went from 28-30 days to now 23-25 days), several days of spotting before a full period start, with lots of cramping and heavier bleeding/small clots, followed by several more spotting days. I have mild to moderate cramps multiple days of the week, back pain as well, and intermittent sharp stabbing pains on both sides of my lower abdomen. On top of that, I have bloating/gas on a daily basis which doesn't appear to be related to diet at all. Lastly, I had my first experience with mid cycle spotting (about a week before my actual period started) with sex. None of these symptoms stop me from functioning, working etc, but they suck and it's annoying and uncomfortable. I've been through food allergy testing and several GI tests with no definitive results because of the co scant cramping and bloating.

My doc said the same as many of yours, that he feels it's adeno and we could try BC, ablation etc, but those are not very effective (and I hate invasive procedures to begin with) and a hysterectomy is the only cure.

I've literally spent hours on this site over the past two weeks (thanks for all of your stories and experiences!!) and have decided to go for the hysterectomy. My reasoning is that the pros outweigh the cons: no more pain/bloating, no more periods, no chance of uterine or cervical cancer, no worries about adeno worsening or ending up with other fun stuff like fibroids and uterine prolapse and my ovaries are great, so no menopause from surgery. I also have two kids and no intention of having more!

So my question is this...am I crazy for being proactive about doing the surgery to prevent worsening symptoms or problems? When I read the posts on here, most ladies have far worse symptoms than I have, but many also say that they waited too long and wished they would've done it sooner, or that their pain and bleeding got soooo much worse. I really don't want to get to that point!

So has anybody else gone for a hysterectomy before they actually felt they HAD to do it?

Thanks so much![/quote]