Hi. Yes I am 33 and I had a hysterectomy about 7-8weeks ago. I still have pain, however, I like to think that at least I have prevented the disease from becoming worse and effecting more of my organs and nerves. Also, I am hoping that as time goes on things will improve as any remaining endo dies and scar tissue is broken up and I continue to get stronger physically, and the nerve pain takes a long time to heal or maybe never fully. I would say it is a very slow process, but I remain hopefull and that my mood is already better than it was previous to my surgery. here are ladies here that it has not helped. There are many other that it has. The most important thing is to ensure removal of your ovaries at the time of hysterectomy. This is because they create the estrogen that feeds this disease.
So, long story short, there are several items to consider and is not to be taken lighly. But it sounds like you already know that. And I was just like you, I had tried everything, BC, lupron for a year and pain just remained. My surgery revealed that I had numerious cysts blocking my fallopian tubes and in and on both of my ovaries. Would I do it again? Absolutely! It is a hard road but at least I feel like now I might have a chance. Also, I have reduced my chance of breast cancer because of the ovary removal shrank since that runs in my family that was an added benifit.

If you have other questions or want to talk more, please feel free to reach out.

Hi!! Whether you do the hyster or not is your decision. I've had 7 laps, Lupron, BC pills all of it!! I am scheduled for a hyster in a few days (16th) and SO glad I am doing it. PLEASE REMEMBER: A HYSTERECTOMY DOES NOT CURE ENDO!!! But the debilitating periods, mood swings, and fibroids are enough for me-that's why I am having it done. Check out a GREAT website called HysterSisters.com! You will get support from other women like you, advice from women who have had it done, and alternatives to hysterectomy. PLEASE check it out!!! Good luck!

If you get rid of your uterus, will that help your mood swings? I'm absolutely going insane. Seriously. Not fun :( I want one too. Another thing I heard was that your bowels can get weird because your uterus isn't there to support it? This makes no sense as a man doesn't have a uterus and he's fine.

Vans- I am so happy to hear you're doing well! I have a stupid question for you. And I am not asking to upset you I honestly do not know. So you got your ovaries removed because you wanted to stop the estrogen production which I do know feeds the endo. This makes sense. However, you do HRT which also makes sense, but doesn't that also help the endo grow since your putting estrogen back in your body? I seriously am asking out of ignorance and there probably is a good reason behind it, I'm just not following I guess.

I just want to thank you all so much for sharing what you are going through with me. I don't know anyone that can relate to what I'm dealing with so it's so nice to know that I am not alone.

Alana3- I have also heard that about your bowels and plan on asking my specialist about that when I see him at the end of the month.

I just can't stand the bloating and constant pain anymore! There are some days where I can't fit my work pants or they fit in the morning and by the end of the day I have to unbutton them to drive home. I also wont go out if I'm too bloated as it is very uncomfortable! Anyone else feel this way?

Vans - just wondering, and I hope you don't mind me asking, do you have any kids? I don't so this would be a drastic measure if I chose to go ahead with it.

prettykitty22 - good luck on the 16th! Thanks for the website link!

Please let me know what they say about bowel situation if you wouldn't mind. I'm bleeding every 2 weeks no matter what they do I bleed- I'm going home early from work today because the pain is so bad.

I really feel for all you endo sufferers! You are between a rock and a hard place. I can only speak about the long-term problems caused by hysterectomy, both from a personal perspective as well as what I have learned from educational resources and medical studies. I do not have endo. Some have accused me of being negative but anyone considering this surgery should go into it with all the facts.

Bladder and bowel problems are common post-hysterectomy although they may not occur until years later. The uterus is not there to hold them in place so they descend and can prolapse into the vagina (cystocele, rectocele, fistula) leading to future surgeries with mesh (and all its complications). The vagina can also collapse/prolapse. The severing of nerves and blood vessels can also impede function of bladder and bowels as well as sexuality.

There are also external anatomy changes. The severing of the uterine ligaments compromises skeletal integrity (spine, hips, rib cage) which alters a woman's figure and leads to chronic back and hip problems. This explains the post-hysterectomy thick midsection and big belly.

I had a hysterectomy 8 years ago at age 49 and I can vouch for all of the above. My bowels have been dysfunctional since the surgery. My bladder problems are minimal but I can't always empty completely and at times don't feel the need to go until it is almost too late. I have absolutely no libido and sexual response is compromised.

The changes to my figure (no waist / thick midsection) are the most distressing along with the resulting back, hip, and rib cage pain now that my rib cage is sitting on my hip bones. And I am "thin" (BMI of 17 and weigh 5 lbs. LESS than pre-hysterectomy).

My ovaries were also removed. Along with most of the classic menopausal symptoms, I spiraled into SUICIDAL depression, EXTREME irritability (not mood swings though), anxiety, feeling overwhelmed by everything, and loss of interest in life as well as rapid aging.

HRT is a must for me (cured the depression along with improving meno symptoms). Hopefully, it's keeping osteoporosis, heart disease, dementia, and all the other medically documented risks of estrogen (and testosterone) deficiency at bay. But taking estrogen can be problematic for those of you with endo.

My full profile includes a link to a video about the adverse effects of hysterectomy if you want more info.

I hope you don't mind me posting. And I hope you all find something to manage your symptoms and give you a better quality of life.

Dont listen to all the problems fightn4 complains of scare you into not taking action for the benifit of your health. While some items may be true, others are because she was not prepared for it, did not do her research, and had other underlying conditions. SHE HAS NEVER EVEN HAD ENDO AND KNOWS NOTHING OF THE ONGOING DAMAGE THAT IT CAUSES. If you wait too long you will end up with nerve damage or damage to other vital organs because of lack of action soon enough. Millions of women have undergone hysterectomy and it has saved their lives or drastically improved their quality of life. Fighten4 is the reason women can not find support on the DS hysterectomy support forum. Some of have no choice and are at the end of our rope.

vansan - Lindsay asked for "advice" from women who've had a hysterectomy. I posted my experience and some of what I have learned. I in no way advised her.

I don't know why you are saying I had " other underlying conditions." I did not. I had absolutely NO problems until I developed a suspicious looking ovarian cyst .I was rushed into surgery due to its size (almost 10cm), ovarian torsion concern, and suspicious looking characteristics (possible cancer). My gynecologist needlessly removed all my organs.

As previously stated, I feel for women who are faced with this decision. It does suck!

Hello Lindsay...I'm sorry for your suffering. I understand your pain. I really cannot advise you on having a hysterectomy, but I would be remiss if I didn't respond to your plea. My story is not the norm, but you are welcome to read my journal post.

Sweetie...I WISH I had some simple answers for you, but as you know...this is a horribly COMPLEX disease that affects each woman differently. Often, as in my case...one's treatment choices are limited. Of course my diagnosis/surgery was 20 years ago. By the time I was diagnosed, I REALLY had no choice. My disease had invaded and consumed my vital organs, and CONTINUED to grow after removal of uterus and 1 ovary. I was only 33 at the time and didn't "want" to lose my ovaries. Unfortunately, I ended up having a 3rd surgery to clean up what my cancer surgeon called a "mess"...losing my second ovary.

Okay, this is where I am DIFFERENT, I guess. There are so many IFs that are involved, but mainly IF I hadn't been dismissed by doctors since the onset of my periods...I can't change any of that. I was on BC from age 18. IT DIDN'T suppress anything, obviously. Perhaps early and ACCURATE DIAGNOSIS could have provided a better "treatment" plan. I did try the Lupron/Depo injections which did not stop the growth of my disease.

I consider myself lucky in that it wasn't endometrial cancer, or I would be dead. MY HYSTERECTOMY was NEVER an option. It had to be done in order for me to survive, period. My disease was so aggressive I was (and never will be) not allowed to EVER take any form of HRT. Yes, I tried compounded bio identical HRT against doctor's orders and began to FEED the disease AGAIN. My bad...really bad.

As I type, I can tell you my belly is bloated like a watermelon. It's not responding (for 3 days) to any softeners or laxatives. I even took a Linzess this morning...still nothing. I have vaginal/rectal/pelvic pain pretty much daily. I have severe constipation, often requiring enemas. I have unbelievable issues with bone loss, and joint pain.

Did I feel relief after hysterectomy? no
Do I feel better today...20 years later? hell no.
If I had to do it over again (same situation) would I? no choice...I'd
have to have surgery to survive (not thrive)

I HONESTLY have no intent to frighten anyone, but...as the previous posters have said...It's ROUGH. It's not a cure. Chances are that it will not completely (if any) relieve your pain. Your well-being and vitality post-surgery will depend on whether you can take HRT. I think Vans thought she'd be able to, but thus far has not. Right, Vans? She, like me @ her age HAD TO HAVE the surgery to save herself. It is a case by case decision. This is a hard row to hoe...Words are hard to hear. The TRUTH is painful, but necessary.

Please find a doctor who is competent to treat endometriosis. That is the most important factor. Gather all information to weigh pros vs. cons. The worst thing you can do is NOTHING. This disease does not take a holiday. It will TAKE YOUR LIFE if you're not vigilant. Baby, I wish you the best. I'm just sorry that I can't make it all better for you.

~~Pup

Thank you all so much! I have an appointment with my specialist at the end of the month. I know that it is BACK! Almost seems like with a vengeance! lol Just not sure what my next move is going to be but I know I can't go on like this. I came home from work early on Friday and didn't even go in yesterday. Haven't been able to do the high intensity workouts I love to do, haven't felt like doing much of anything. Like I mentioned before, I feel like I am living my life around my endo.

Initially I tried bioidentical hrt and that made me sick as a dog! Then i tried a combi patch which also made me sick. Then I tried progesterone only and that made me sick......Now I am trying estrogen only and at a super low dose because I am afraid of it fueling the fire but also dont want terrible osteoparosis. It is a rock and a hard place for sure and you will need to tinker with things through the whole process unfortunately. I even tried vaginal trigger point injections before having my hyster and that was a toss up. Action for me was better than inaction as the doctor already had warned me that I may have some permanent nerve damage. Just keep trying what seems best for you and ask questions all along your journey until you feel you have determined what is best for you. Hugs.