The HERS Foundation offers free counseling to women check them out. I had a partial hysterectomy due to endo, and it was the worst decision I've ever made. Sex is NOT the same, HRT doesn't replace your natural hormones and now I have Pudendal Nerve damage. You will face possible bladder prolapse, bowel issues, increase risk for osteoporosis (even with ovaries they fail 40% of the time) and increased risk for heart disease. Here is my friend's website fighting endo: http://rewired-life.com/
Try castor oil packs, Mayan abdominal massage, acupuncture and possible diet change. Try yoga and sea salt baths. I wish I knew about these things before my surgery and wish I would have my old body back, everyday is a struggle and the energy I had is no longer available. I wish you the best.

Oh one more thing HRT with Endo is VERY tricky and most women can't take estrogen who had endo as it feeds the endo, without the estrogen you experience vaginal dryness, dry eyes, brittle hair, dry skin...etc...please do your research.

ColSkiier - Thanks for the HERS link.

I'm sorry your experience wasn't good.

I have done a lot of research into this, and I had a long winded response to give but I deleted it I don't want to be bitter. But I have researched this a lot.....This decision has been years in the making.

Hi taters. I know you are between "a rock and a hard place" and I am sorry for that. I have given you my input about the lifelong functions of the female organs over the last few years so will only add a few comments / things to consider.

Adenomyosis does not typically occur in women who have never been pregnant. However, uterine trauma can cause it so it would seem that something even as simple as a D&C could trigger it. Adeno can be difficult to distinguish from small fibroids on an MRI.

I know it is said that endo and adeno are "related" but one study says they co-exist in only 10% of cases. How do you know if it is the endo or adeno that is causing the most pain? Adenomyosis is supposed to resolve naturally with menopause. This would make sense since adeno is confined to the muscular walls of the uterus (myometrium) and you no longer have the activity of the myometrium after menopause. Endo is another story since those implants can be found throughout the pelvis so menopause nor organ removal is a cure.

The removal of your ovaries will obviously throw you into what is termed surgical "menopause." I have put that in quotes since intact women in natural menopause continue to produce ovarian hormones into their 80's especially testosterone which can be converted into estrogen. So it is possible that your adeno symptoms (if you indeed have pain from the adeno - not all women do) will subside with ovary removal and cessation of menses. That would give you the possibility of pregnancy and childbirth. However, I am not sure how HRT affects adeno but that is something you would need to research. It would seem continuous HRT (versus cycled) would not stimulate the adeno.

Of course, if you keep your uterus, you will need to take a progestin or progesterone if you take estrogen. But this is recommended by some practitioners for women with endo even after hysterectomy with ovary removal as a progestin can help keep the endo from proliferating. Of course, it would also be helpful to get a skilled endo specialist to remove ALL endo implants, organ removal or not.

DISCLAIMER: I discourage sex organ removal except in cases of confirmed cancer. But it is every woman's personal decision. I just try to disseminate the information necessary for each woman to make an informed decision.

You have Fighting for change and I see you're still going about trying to "inform" ladies based on your own experiences.
You were actually the reason I didn't want to comment in here but I knew I'd have to take it if it came if I wanted the advice.

I am severely concerned if this lady mistaken my adeno for fibroids so lets assume the woman who has been trained especially to detect adeno knows her stuff hey ;)


I think I'll just ask we forget this thread - there's huge assumption I've

A) not tried everything
B) done 0 research

I think its presumptuous and rude when I came seeking advice for the above ONLY, funnily enough were really not even answered....

Let me tell you another story...about a girl who also came here seeking advice this board scared her shitless, she questioned herself so much because of it. I messaged her the same time I posted here, she told me to stay clear of this board if she had listened she would have been in hell still...however she now has the BEST quality of life, something she'd never have imagined and this is close to 4 years on from her hyst.
So no, it doesn't always end up like you. I'm sorry your experience was horrible I've always said that.

But YOU in particular could have stopped her from making that choice...and her life hasn't been better.

But I'd rather this threat be deleted or ignored.
Clearly I'm not going to get the answers to the questions I posted or the support I need.

thread*

Some people have menopause right away when having ovaries removed but not all people do be careful there are a lot of negative people in this group fearmongsls who are just here to scare people. Good luck

Have you considered your pain is from a nerve? Have you had an MRI? Fighting4change isn't out of line here, the facts are the facts. My aunt is an obgyn she only performs hysterectomy if her patients have cancer, or their uterus is falling out, she also doesn't believe in using the machines doctors use on most patients due to patients becoming injured from the machine...she advised me against my hysterectomy, I didn't listen and wish I did because now I suffer with urine leakage and Pudendal nerve damage. This nerve is damaged way more often than people or doctors know about, it is believed the nerve becomes compressed or entrapped from the positioning during surgery. Look it up!

CoiSkiier - yes I have :) I've also had many procedures done for this including a device implanted for it.

You're right the facts are the facts, you both so conveniently left out possible positives and good things about the hysterectomy just because yours did not go to plan, perhaps you should research...or talk to women who have had positive experience so you could give a rounded education

I am in a Pudendal nerve group, another woman just joined the group who is 29 hysterectomy led to PN....my aunt had a hysterectomy years ago and she didn't have problems, but now she is having problems....its obviously totally up to you, and I will not give any advice on positive outcomes because there are few positive outcomes, this surgery leads to many other things happening. I know a lot of people who had this surgery and all suffer. My girlfriend had thee vaginal cuff revisions, she suffers with sexual dysfunction, so I can't give positive outcome. I own my story, and its my story to tell. You will have yours and if two years after your hysterectomy your story is good then please share your story, but I can't tell anything different because I haven't experienced anything different....

taters - This site says it is for people to share their "knowledge, experience, and support." That is what I do here. The facts about the effects of hysterectomy and/or ovary removal are not pretty so I will not sugarcoat. Only you can decide if the trade-offs of the adverse effects are worth the possibility of short or long-term pain relief. If you want to focus on the "positives" and ignore the negatives, that is YOUR choice. Be aware too that some women will not tell-all (some were mum before I had mine but opened up AFTERwards). Also, there may be other women who read this thread and so it is important that we give our input.

Also, there are women here and on the Endo group who have had hysterectomies who still have pain, one in particular is MANY years post-hyst and has little quality of life. They are not all forthcoming about their continuing pain and/or the fact that they had a hysterectomy.

As far as answering your specific questions, I did address fertility and HRT (combined versus estrogen-only to keep endo "at bay" - uterus or not). If you read my profile, it also has useful info about HRT (symptoms it has helped for me). HRT is not one-size-fits-all so it's moot as far as the delivery route and dosage that I use. And remaining endo is a source of estrogen.

Again, I am sorry you are in this crappy "rock and a hard place." But don't shoot the messenger. I wish you the best in this health journey.

Actually Fighting for change...the reminder in this very box states:

"Reminder: This is a support group for Hysterectomy. We trust you will do your best to remain positive and helpful. For more information, see our rules of the road."

Postive and helpful...providing me with ONLY negative is neither positive nor helpful, mostly it isn't helpful.

I understand there are many negatives, I appreciate knowing them, but if your intention is to come onto my thread provide the negative and ZERO positives I don't see how it's at all helpful? How is that rounded knowledge of ALL my possible outcomes?

Again, I am sorry you're in a crappy place too, but don't come onto a thread unless you're going to give ALL the facts, positive and negative regardless of if they co inside with your experiences. I've had to do this many times myself even when my experience has been nothing short of horrible.

Taters,
Unfortunately there are not many positives with this surgery. What you won't get a period? Some women still experience cramping and phantom pains on a weekly basis. I have pain every single day, what went from two weeks of bleeding and pain went to every single day. If my story isn't "positive" I can't say that I am sorry either, because it is real. Look up Hystersisters website, while I don't like their site because they market hysterectomy, but look up the "Road Less Traveled" as they call it, it should be called "The Road that is Traveled" because those stories are the ones I hear about most often. My girlfriend needed prolapse surgery one year after her hysterectomy and she was a triathlon, now she's not. She is in severe pain from the mesh they used. There are no easy answers taters, and this is not an easy "fix" like with weight loss, there are no "quick fixes" and I think fighting4change is making you aware of the facts, although they may seem "negative" to you they are the medical facts that can't be erased. If you go through please let us know how you are in 1.5 years because the after effects don't kick in until then. Best of luck to you in your decision, and as a woman I would NEVER tell another woman to go through with this and have her sex organs removed. I dearly miss the intense passion I had with my husband and to know it is gone is like I am empty inside....

The main DS webpage says "Become a member now and join the largest, most comprehensive network of people sharing their knowledge, experiences and support."

I cannot give "positives" because I have not experienced any and will not mislead you by saying I have. That is why it is important to read MANY women's experiences. There aren't enough women who still post here but, as I said previously, many have cycled through with mostly negative experiences. The discussions are there to read through if you so desire.

As ColSkiier stated, "The Road Less Traveled" on Hystersisters is a good indication of the long-term side effects of hysterectomy. So are "Pelvic Floor and Bladder Issues", "Endometriosis Support" and "Sexual Dysfunction after Hysterectomy." I am not a fan of this site either as it profits from hysterectomy and ovary removal with all its ads.

I was only trying to help when I suggested you at least consider keeping your uterus (not only for the possibility of having your own child(ren) but also for its essential anatomical, skeletal, and sexual functions). I know other women who have done this (don't know if they had endo or not).

I have also lost the passion for my husband (he feels more like a roommate) as well as my strong maternal feelings for my children. I also describe this as emptiness (not only for loved ones and friends but for life itself). This is beyond devastating. This is separate from the sexual dysfunction. Uterine contractions are a source of oxytocin (the feel good hormone). So the loss of the uterus and oxytocin may at least in part explain women's loss of loving feelings after hysterectomy, ovary removal or not.

It's not pretty but it is my reality.

WOW Coiskiier - this whole time you have made it out like I have no clue, no it's not because I just don't want to get my bloody period, if I was making my choice souly on that I deserve for it to go wrong.

You were a athlete? I can barely stand for more than half an hour because of the pain. Since you bring up loss of energy - I have none already because I put so much effort into staying bloody upright.

You mentioned my sex life would be out the door? I havn't had sex in 3 years (I've been with my partner 5 years) when I confronted him about it thinking it you know what his response was "You don't remember do you? The last times we had sex you were screaming in pain and bled EVERYWHERE, I don't want to cause that again" So we have no sex life because he is assured and probably rightly so he is causing me pain and causing my bleeding everywhere. Having sex at all would be an improvement! I never had organisms because sex was so painful confirmed by doctors as the adeno is positioning my uterus so his penis hits it, since you keep bringing up sex life theres mine currently.

I have pain every single day now, forget my period (that goes for 3 weeks, causing me to black out) I use over 40 super pads per day, for the first 3-5 days of my period, my partner has to have someone come and watch me because of my blacking out constantly, when I go to the bathroom or the shower I leave a pool of blood on the floor so my partner has to start the shower then help me get there then undress me and help me in because I'm wailing in pain....understandably so according to my surgeons.

Instead of having my holidays now for the last few years I've been having medical treatments and surgeries or in hospital due to pain.


So, no, I'm not making this frigging decision based on not wanting my damn period. If you want to compare endometriosis stories love, I'd gladly do so, but I can already see a vast difference if your pain was only based on your period, you were able to be an athlete and you have admitted not trying all other options.
DONT assume I havn't you havn't even asked me to tell you what I have tried? You just ASSUME it's nothing!!!
I'm sorry I'm not being nasty, I'm sorry I'm being blunt but this entire time you've treated me like a little girl not wanting her monthly, like i'm ignorant because I havn't tried all my options...have you even asked me?

I'm sorry both of you had bad experiences....if you're going to keep up with this could you perhaps approach it differently starting with asking them why they are doing it and what it is they have tried, not everyone is like you!

If I could delete this frigging thread I would.