To Hysterectomy or Not…

This has been the most fucked up 24 hours of my life. I want to say how great Matthew has been to me. I’m reeling from the news of surgery and he has been logical and loving when it comes to discussing this. I don’t know what I’d do without this man.

Yesterday, I had a physical examination by one of the best gynos in pheonix. He said he was unsure if he’d be able to feel my fibroid…and the moment he touched my stomach, I could tell he was surprised and he turned serious. I’ve been having trouble for 2 years now with bleeding when I’m not supposed to due to fibroids. I’ve seen 3 Great doctors. The first one tried every birth control she could on me to help with the bleeding. It only lasted a year before it got bad again. I bleed a week before my period…and it’s black.  The 2nd doctor wanted me to get surgery, she couldn’t believe I was not in pain with the fibroid that had grown into my bladder, smashing it in half. I was scared…I put it off. That was November.

Now, here we are entering April. I can’t see movies because I have to leave to pee nonstop. I have trouble even getting my pee to start…and when I do, no matter how much I wipe or sit there afterwards, I trickle some out upon standing…. Matthew started making fun of me for dripping on the seat…it isn’t common for a woman… He quickly stopped when I told him what was happening to my body. Then he started pressuring me to see a doctor.

A month ago, I woke up and realised I had pissed myself. Luckily, I fell asleep in pants so they absorbed almost everything.  I was horrified. 34 years old and I peed on my bed. I tore off the sheets and tossed them in the laundry. When Matthew asked why, I lied. I was humiliated! Who pees the bed at my age? Then, I peed a little when my stomach pushed against the counter.  Matthew was right, time to make the appointment.

So, yesterday, my doctor came in with pamphlets on the Da vinci surgery. He said I should keep my uterus if I want to have kids…and soon. Otherwise…..boom…he hands Me hysterectomy pamphlets. All I heard was white noise. It’s one thing to say you don’t want children…it’s another to see your choice fade away. Not just choice…your ability to create life. This is a big fucking deal. I spent the next 3 hours waiting and getting ultrasounds outside and in…holding back tears.

I raced home from pheonix yesterday in a dreamlike state. When I got home I just fell into his arms. After getting what I needed out of them I looked him dead in the eye and said we need to make a big decision together. We need to decide if we are ever having kids…if he means to spend his life with me…if this is a WE decision or a ME decision. I dont want to wipe out my ability to create life if he leaves me in a year or suddenly wants babies. In true Matthew fashion, after asking if he intends on marrying me he says “jesus…duh!”  Lol. Then I asked if he wants children…he doesnt. I already know it would be very hard for me to have kids with the amount of issues I’m having. My grandmother died of uterine cancer…my cousins have been having similar issues…

I never wanted kids past the age of 35. This year I turn 35. I’ve said for years “I don’t think I could have kid’s even if I wanted to”. It’s like…I had some premonition about it. I could live my life happily so long as this man is by my side.

I’m afraid. I’m trying to decide what route is best for me. I’ve been wanting to fix my tits and get rid of my toxic implants…but this is more important. I’m sure it won’t be cheap…but what is the price of your health? I keep imagining the movie “UP” and their money jar…constantly having to break into it. Do I keep my cervix or get rid of both my uterus AND cervix? Do I attempt to keep a failing uterus inside my body? I’m under a lot of stress and pressure. It’s been comforting to know other women have been through this too….to have this guy be at my side and promise he intends on staying there and committing to me in our future.

I must have surgery. Now, I must figure out which is best for me….thanks for the kind words…the shared stories…and information, guys.

TIP JAR
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35 Comments

  1. I finally gave in and had a hysterectomy 8/2016. It truly changed my life. The procedure had been recommended multiple times over many due to large, painful fibroids with subsequent bladder issues but I still couldn’t bring myself to have the surgery. Even after an ER visit for weeks of abnormal bleeding with significant blood loss, I still questioned if should have a hysterectomy. It’s a hard decision, whether one wants kids or not. Its an emotional decision. Thank goodness you have a wonderful man standing strong by your side who understands that your health is more important than anything else. You can do this! You deserve to take care of yourself:)

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  2. I suffered for 20 years and at 43, I finally had a hysterectomy. It has been the best thing I have ever done for myself. I had them take my cervix (it’s nothing but a cancer risk at this point) and they took one ovary because it looked “suspicious.” I feel so much better. It has been five years and I can’t say I’ve missed it at all. I was worried it would affect my sex life. It did, but for the better! It’s a lot easier to get in the mood when you aren’t bleeding and/or in pain. (Plus, I was also having trouble with urinary incontinence and, even if our guys are understanding, that doesn’t feel very sexy.) I was worried I would put on weight. I actually lost weight because I could be more active. I was worried how it would affect me emotionally, but any sadness associated with the loss was erased by the improvement in my health. You may grieve a little for the loss of options, but the benefits will outweigh any feelings of loss. I promise. Best of luck to you!

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    1. If you take a woman who is having pain and/or heavy bleeding and then she feels nothing or is no longer bleeding, then that would be a plus for that woman for the immediate affect. Cuddling and a clitoral tickle may be a sufficient trade off. But if you take a woman who has sexual pleasure and then feels nothing that is a huge loss….Hysterectomy, like it or not, cuts nerves and diminishes pelvic blood supply…and alters a woman’s genital anatomy….Doctors need to make sure ALL non surgical options have been offered and tried…….

      Liked by 2 people

      1. And who says the doctor didn’t explore those options? Every woman’s situation is different. No sense of loss here, and my sex life is fantastic! Sorry. =/

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    2. It is baffling that any hysterectomized woman would encourage another woman to undergo hysterectomy and to deny the irreversible effects of the surgery. Some women speculate that some women do not like other women. Others feel that it may be because misery loves company. HERS does not know the answer to why, but we do know that is critically important to know what happens to a woman’s body when the female organs are removed. How it changes the functions of adjacent organs (bladder, bowel,vagina and clitoris) and how the loss of the functions (uterine orgasm, shortened vagina, nerves and blood supply. There is short excellent video: http://www.hersfoundation.com/anatomy/index.html
      Say no ’til you know!!!

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      1. Well, I guess it depends. My ex wife, the mother of my two children developed a fibroid when she was pregnant with my daughter. It was scary as hell, but they removed it, she had our beautiful daughter and had her tubes tied. We chose not to have any more children after our daughter. I don’t believe that it’s totally a can not have kids scenario, but it can cause complications. Good Luck gorgeous lady!

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      2. http://www.medscape.com/viewarticle/805517
        This is an article on the Long Term Effects of Hysterectomy….So if you don’t want to believe what HERS says, then read this straight from the medical community’s mouth. Very scientific, very clinical…..but supposedly data driven….I had the surgery at 53 and regret it frequently…Not trying to scare you or discourage you, just stating a fact…I had my ovaries out too because I was BRCA positive…Not that it matters. Regardless of the reason, nobody is ever the same after surgery. I would suggest you find a naturopath (don’t laugh) and see if you can get your hormones in check. I knew a woman who was having fibroids with heavy bleeding and she did a cleansing diet and it helped tremendously……If you feel your cervix and it is part of your sexual response you will have to adjust. Depending on the size of your partner, there could be a ‘fit’ problem afterwards…Doctors will tell you the vagina stretches like when you have a baby but they don’t stop and think that when you have a baby your hormones are affecting the elasticity of the vagina and that is not the case when you are not pregnant…If you are use to having deep, enjoyable penetrating sex, that too may be altered…Some of the sexual side affects are dependent on woman’s prior sexual experience. I know women who have not had an orgasm and they are in their late 30’s…For them they probably would not miss much…One sexual affect I have experienced is my vagina feels like it is being pulled when the penis is thrusting in the vagina and when I do feel like I am having an orgasm it seems half baked…uncompleted….But I think the biggest loss is the emotional dullness that I have had to adjust to…You are never the same you just accept a different you…I would try naturopathic alternatives…

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      3. http://www.medscape.com/viewarticle/805517
        Aeshain
        Here is what the medical community says…But the HERS foundation info is based on women who have had he surgery. So I would certainly look at any adverse affect that is over 50% and be prepared for the possibility of these affects. To deny there is not the possibility of sexual, emotional, and physical implications to this surgery is false and misleading…And doctors should inform women of these possibilities….

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      4. When a gynecologist does not have the skill to remove many fibroids (HERS has counseled women with 75 to 100 fibroids who underwent myomectomies) and others with a few very large fibroids (a single fibroid 35cm with a couple that were smaller). A few gynecologists have referred women to other gynecologists who had the skill to do a myomectomy, but most doctor’s egos are too big to say “I do not have the skill to remove your fibroids but I can refer you to a better surgeon.”

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      5. Well mine started in 1994 with a fibroid the size of a cantaloupe and they removed that and an ovary. Then in 2004 I was having between cycle bleeding and my reg dr said I had a miscarriage but that wasn’t true because we went through fertility treatments. I went to gyno and she did a biopsy and came back pre cancerous and said that if I didn’t have hysterectomy I would definitely get cancer so if course I had hysterectomy. It didn’t affect any of my other organs.

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  3. I had this surgery when I was 36 for the same reasons when I was living with but not yet married to my husband. Feel free to email or IM on Facebook if you have questions. I have no regrets at all.

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  4. There are other options than a hysterectomy. Look up Lupron, uterine artery embolization, myomectomy. 35 isn’t too old for kids, my wife had our daughter at 40. I’ve done about 2000 DaVinci hysterectomies and this is the way to go but only if you really need one. As for your family history, you would be well served to discuss this with a Gynecologic oncologist. Matt Borst, Brad Monk, Shins Bhoola are all in Phoenix (I trained with Shins) and are very good. Make sure they have a plan to get the uterus out without morcellation. Also make sure they remove the Fallopian tubes. I would leave ovaries as recent studies show increased mortality later on in life with premenopausal oophorectomy (removal of ovaries). I wouldn’t leave the cervix as randomized studies don’t show any benefit and trust me, going back to take this out later is challenging. Happy to discuss this further if you want to privately.

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  5. He’s suggesting the same surgery that I had. It was about 10 years ago for me, 40ish lol… my fibroid was on the inside of my uterus. I would bleed randomly, wake up in a puddle. I also had very large blood clots just drop out of me while going to the bathroom. I won’t lie to you, it took a year to feel normal again. After that, no regrets. I had two children, so I know that’s something you’re struggling with. Since Matthew doesn’t want children, that will make it easier for you. Sex is good, no periods is fantastic.

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  6. Four years ago I had a partial hysterectomy with the Da Vinci (uterus, cervix and one ovary). Previously my periods were heavy (2 super tampons and a pad) and arrived with no rhyme or reason. I was being treated for anemia due to how much my body was going through. Even though my tubes were tied I still tried birth control to help regulate the heaviness. When my doctor suggested surgery, the agreement was to keep one ovary to save me from going on hormones. A year afterwards I was having severe pain and it was found that endometrial tissue was growing in my abdominal wall (from having c-sections) and my last ovary was telling that tissue to grow. Lol, it was ironic to me that I only had endometriosis after my actual uterus was gone. The following year after that, the doctor was monitoring growths on my last ovary and we decided it was best to avoid complications and to let that one go as well.
    Looking back I would have just gotten everything done together at once. Do research on hormone therapy and ask lots and lots of questions. Most importantly…remember to go easy on yourself and let that guy of yours spoil you while you heal.

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  7. I was in the same situation at the same age. I knew I didn’t want to pass on my genetics to any child! I figured if I ended up wanting children (didn’t before) then I could adopt a child that needs a home. I put up with ridiculous pain and bleeding for a year before my partial hysterectomy. I have my ovaries but everything else is gone! I have not looked back and my only regret was waiting as long as I did. I have had NO issues after I healed from the surgery. The recovery sucks! You won’t be able to stand without hunching over for the first week! Follow the recovery instructions to the letter and you will have a much easier recovery.

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  8. Adrianne, do what is best for you. I grew a fibroid tumor IN my bladder. It was not connected to my uterus, just made its home in my bladder. I had 2 surgeries to remove the muthafooker. I was able to keep my bladder, but I have to go for more tests in 2 weeks because something is happening down there and I think the thing respawned. Tumors are no joke and very painful. Big hugs.

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  9. Dude, I’m a trans guy but as a woman, i had those same problems and having a hysterectomy was the best thing that ever happened to me. I decided to keep the cervix which I’ve heard makes for an easier recovery. My decision with regard to the cervix was based more on my concern about possible effects it could have on sexual function and I’m certain it was the right choice for me. I had a very easy recovery from the surgery and was up and around within two weeks. Someone in a previous comment mentioned Lupron as an alternative you should consider, i strongly disagree. I looked into it prior to surgery and it can have devastating long term health effects. Wishing you a speedy recovery.

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  10. I had reoccurring bladder and yeast infections for 6 years, with barely a few days in between. I went through so many tests and so many painful procedures. The doctors were baffled how I kept getting ill. There were days that I was so raw I was bleeding from the infections. I had bad cervical cells and they would scrape them out and then they would come back. The docs finilly had me go through chemo for 6 months to kill off the weird cells before they turned more serious. But I still got infections. Then they decided that I had nerve damage from a car accident I had been in 2 years before.

    Then I found out the real reason…my ex kept getting infections from not being a clean person (cheating), so every time I got well he would give the infection back to me. We got divorced after 6 years of pain and misery. I get the final papers on april 14…I have had not a single infection since he moved out.
    I have moved on in my life and I’m telling you, this seems hard and terrible now, but for 6 years I was told that that pain and torture was my life and there was nothing they could do. I thought I was condemned to be sexualy dead at 38, and in pain for the rest of my life, feeling like I had to desperately pee for 24 hours a day with no relief. I know you have forgotten what it feels like to be be whole and without all of this crap, but the relief you will get from that surgery is going to be incredible…trust me you should go into this like a woman getting a new lease on life…I hope great, wonderful things for you, and I wish you the best possible outcome. Don’t be afraid, you can do this.

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  11. Feel free to reach out to me if you want to know the real reason hysterectomies are pushed on American women in particular.
    The surgery to remove a uterus involves two cuts and then it is removed. Myomecomies with larger fibroids or fibroids in great quantity are actually difficult to remove and involve skilled precise surgery. Also like the first surgeon told me is that 7 hour surgery to save the uterus is more expensive. Saving the uterus for complicated fibroids is billed to insurance as $85k instead of under $10k for myomectomy.

    I was persistent and I can tell you that the only reason I have a uterus today instead an empty area where I feel tugging and organs shifting is because I refused to have a hysterectomy and was my own advocate.

    I can even refer you to my Stanford alumni surgeon. Contact me via email. I’ll help you anyway I can.

    Winona

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  12. OMG……Adrianne I didn’t know. I will keep you in my prayers. I’m sure you’ll figure out what is best for you and what will keep you healthy. I’m glad you have Matthew during this upsetting and scary issue. Love and hugs, Anne

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  13. I’be never posted here before, and I’m a guy so I already feel bad about offering an opinion. Let me just say it wouldn’t matter to me if a child was born to me or adopted. He would be OUR CHILD and I would love him and the mother just as much.

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    1. I am glad a guy is posting. HERS has counseled over 1,850,000 women and about 5,000 men. Your opinion and perception is welcome.

      It is great that you feel that way about adoption, and many women and men share similar feelings. Not being able to conceive or have a child is only one part of the effects of having the uterus removed.

      The uterus is a hormone responsive reproductive sex organ that provides structural support to the bladder and bowel. Regardless of the desire to conceive and bear children, the uterus is a vitally important organ all of a woman’s life. There is no time or age when the uterus stops functioning. Menstruation stops after menopause, but the uterus and ovaries continue to function into advanced age.

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  14. So I feel the need to share my brief story. In 2008 I had a miscarriage and was diagnosed with a uterine fibroid, my doctor assured me that they were common and I needed to do nothing. I ended up going through a very difficult time in my marriage which ultimately lead to a divorce. I hadn’t returned to the dr for awhile I had a LOT of break through bleeding, mid cycle it scared me. I also noticed my abdomen getting harder, larger, I felt full after meals and I had to urinate ALL THE TIME. My periods were so heavy that I would wear a pad, ultra plus tampon and some times I would need to change hourly. Move forward to 2012 I am in a new relationship, I am 33 I have a bleeding episode that I panicked and called my sister who drug me to a new obgyn. I went and she pressed my abdomen and was like uh your uterus is measuring the same size as someone 7 months pregnant you need an US and ultimately surgery. My uterus was so riddled that they couldn’t measure how many, the sizes nothing it was a big blur. She said surgery, I said ok then I will be ok to have kids. She said honey I don’t even know if we can salvage your uterus it may be patched back together, or it may be a hysterectomy. I wanted, NEEDED, children. I had this wonderful man who longed to be a dad and empty arms that always yearned to hold a baby. He stood by me and kept me strong and said he wanted me no matter what. Moving into the surgery they really didn’t know what they were going to come into, I had awful lab work prior to surgery which found me walking around with a hemoglobin of 6 (normal 12) 3 blood transfusions, then I opted to take a lupron injection which was supposed to throw me into early menopause and shrink the fibroids. It did not I bled for close to a month, I had 6 days of the heaviest and scariest bleeding I sat in my bed wearing depends with towels underneath of me. I had a coughing fit in the car and with each cough blood was pouring out. It was terrifying moving up to surgery I was overwhelmed, anxious, terrified that I would wake up to no uterus. My doctor is my hero. I woke up to her looking down on me smiling telling me we saved your uterus. She said my fibroids were the largest she had ever seen, I have a scar that is from the top of my pelvic bone up my abdomen, around my belly button and about 2 inches above. My fibroids weighed in at 8.5 pounds of grossness. My recovery was difficult but within 3 weeks I was feeling much better. My boyfriend and I wanted to try for a baby as soon as possible, the doctor said a year. My surgery was in April, the following may I got a positive pregnancy test. I carried that baby to 34 weeks and she is perfect and 3 years old. In march of 2015, at almost 37 years old I became pregnant with my son. Carried him to 37.5 repeat csection, perfect. Here I am at almost 39 years old one day shy of 28 weeks pregnant with our final baby. I knew that I wanted babies but being faced with what if I couldn’t I pictured life and I knew I would be ok. Having children isn’t for everyone and I fully support you if you choose to not have babies. I don’t want you to give up on that dream bc of the fibroids or decide for hysterectomy when it wasn’t necessary.I support you in your decision and journey but if I could offer any hope or support I wanted to do so. Fibroids suck, they’re nasty little shits with a mind of their own. In fact I have several teeny ones that have returned and are closely monitored during my pregnancies, but they have caused no further issues. Best of luck xo

    Liked by 1 person

  15. I’m sorry to hear you are going through so much, but I’m also glad to hear you are on the path to getting help. Once thing struck me about a comment you made. About not wanting kids… but that losing the ability to get pregnant is a huge deal. I know exactly how you feel. When I was a teen I was pregnant but didn’t deliver – too young. Since then I always kinda assumed at some point I’d probably be pregnant again and have a baby. But as time went on, I ended up with a partner who wasn’t into kids. I can’t say that I was wanting kids either. And so we agreed there wouldn’t be any. Then laying in the stirrups during my pelvic exam my doctor asked if I planned to have kids. Upon hearing no, the suggestion was to get that taken care of so I didn’t need to be using hormonal birth control as I got older. It all made great sense. Except for that exact feeling you describe – not going to have and not being able to have are TOTALLY different. I did pretty good as I waited for the appointment to become an “it” but on appointment day I was a wreck. It didn’t feel rational but it was what was in my head. I remember laying there getting prepped trying to think up a rational reason to get off the table and go home fertile. A few minutes later I felt that complete relaxation the anesthetic brings and realized it was too late to make the excuse. A little while later I was one of those women who can’t get pregnant.

    I’m doing ok. You will be ok too. Its bloody weird to know you can’t… but its ok. The worst for me is seeing someone else heavily pregnant and knowing that can’t be me. I don’t want it to be either… but… it can’t be. And that is different than just not wanting it.

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  16. I going through the same thing from a different asshole heath condition. I will be 35 in August, no children. I keep flip flopping on what to do. Thanks for all the comments ladies and good luck Adri.

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  17. Kids enrich your life in unimaginable ways. And for the right people, they can make a better versions of you and your partner. Think bout it.

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  18. I don’t believe the decision to have a hysterectomy is an emotional decision, as it’s not about whether you want children, or whether a man will stand by your side, given the constant and changing wheels of life. But you may want to consider the following:
    – have you tried treatments known to be effective for your condition, or merely (known) ineffective treatments, thus convincing you that surgery (hysterectomy) is your only option
    – correcting the assumption that your uterus is failing, when all you have is a benign, localized condition, the symptoms you have been dealing with could be the result of a number of things
    – are there other parts of your body that you would readily allow to be removed, and expect to go on with life normally – why is there this assumption concerning the uterus
    – do you believe that the response of “i’m fine” or “i have no regrets” is a reasonable response after the removal of a functional organ of this magnitude. Would you not expect the aftermath to be more complex
    – are you considering the women who are posting warning as (negative) versus the women who are supportive of hysterectomy as (positive). That would be a mistake.
    – most women find more support to agree to a hysterectomy, and lesser/to no support in it’s aftermath, but, you may find that no amount of support is enough after the lost of your health

    Unfortunately, this is a time that can be clouded by many distractions, supportive family/friends for surgery, doctors for whom surgery is the ultimate solution, symptoms that are all attributed to the fibroids, and fear.

    Liked by 1 person

  19. Sorry to hear about your suffering. I can relate as I suffered from fibroids too for many years. Hysterectomy is one option among others. You can look into myomectomy, UFE, Focused Ultrasound Ablation, as well as natural therapy. I know its a tough decision to make and you definitely want to weigh the pros and cons of each option. The “Fast Facts” section of this site I found googling around (www.beatfibroids.com) explains the pros and cons of each option. You can see if it makes any sense to you but it is what I have been looking over to decide for myself. Thanks for sharing your struggle Adrianne and know that you are not alone. Wishing the best for you!

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    1. Thank you for sharing your struggle Adrianne. Many women have to make this decision everyday as to what treatment they want to pursue. I had fibroids for many years and learned how to shrink them naturally. I was blessed with the opportunity to teach others how to do the same. While hysterectomy is an option, I would recommend giving natural therapy a chance.

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      1. Suzanne, the decision you made was most likely the right decision for you, if you were fully informed. An endometrial biopsy can show endometrial hyperplasia and endometrial cancer. Since your doctor predicted that your endometrial hyperplasia would become cancer, it sounds as though treatment of the hyperplasia might have been appropriate for you. Perhaps you had another health condition that needed to be taken into consideration.

        Women reading this post should know that endometrial hyperplasia can be treated with a strong progesterone called Megace after having a D&C. The dosage would depend upon the level of hyperplasia you had.

        Early stage endometrial cancer is often treatable as well, also with a D&C and a high dose of the progesterone Megace. Both endometrial hyperplasia and early stage endometrial cancer should be followed up. How long you would take Megace and followup with ultrasounds of the endometrium and sometimes another D&C is appropriate, depends upon whether the endometrial tissue continues to revert to normal.

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