Hi There. Sort of Newbie with Advice Needed (Long)

Hi There. I came here a while back asking some questions because I was being faced with a possible hysterectomy at 28 years old. I came back tonight and to the Pre-Op board because my doctor has finally agreed to a hysterectomy (per advice of another doctor I saw a couple weeks ago) and my appointment to schedule it (which will be very soon according to her), is this coming Thursday (the 14th). This is what I've wanted for quite some time due to my very heavy, very painful periods, but I can't help but wonder if it is the right decision. Everybody keeps telling me not to do it because of two reasons (and everybody I have talked to have said these exact 2 same things): How drastic of a surgery and how young I am. Everybody is almost in tears when I tell them I may be faced with that decision. They just keep saying "but, you are too young!!, don't do it". The problem is, I feel like I am stupid to not jump on this chance with all the things I've had to go through with my periods for the last 14 years, but part of me does wonder if I would be making the wrong decision if I was to go through with it. Here is my story (shortened version lol).

When I was starting to reach puberty, I would get such horrible cramps, but my period still wasn't coming. The cramps were so painful, they took me to the ER many times. Finally when I was a little over 14 years old, my mom took me to the gynecologist for the first time to figure out why I was cramping but my period was not starting. He did a regular exam and I'm not sure if it was coincidence, or he triggered something during the exam, but very shortly after, my period began. I remember it just like it was yesterday. I had never had my period before but my instinct was telling me something wasn't right about how it looked. I felt very "off" when it started and I know that's normal due to the hormones (just tired, cranky, etc....), but I will never forget what I saw when I realized my period had started. THIS MAY BE TMI FOR SOME OF YOU, SO PLEASE READ WITH CAUTION!. The only way I can describe the appearance was it looked EXACTLY like the blueberries in a blueberry cobbler. It was a blueish/purplish color (not red) with little clots mixed in. Since it was my first day of my first period, I didn't think much of it (even though I was thinking something didn't seem right) and let it go. Over the course of the week, it started getting more red in color until finally a few days in, it was the normal texture and color of a period. I figured that nothing was wrong because it did turn "normal" over time and never mentioned it to a doctor.

I continued to have my periods for 7 days every so often although I can't say once a month because they were very irregular....and not just irregular but they were always VERY heavy and very painful. To share all the stories on how heavy they were/are would take forever so I will only share one that sticks out the most. I bled so heavily that I would always (no matter what) bleed onto my chair in high school. I remember having to slide a piece of paper or a book onto my chair in order for me to get up off of it so my classmates wouldn't see. I remember having to sit in my chair at the end of the class and pretend to look through my backpack until my other classmates were gone so they wouldn't see my blood smeared chair when I got up. And having to tell my teacher about my chair was so embarrassing to even type into words .

In 2000, when I was 18 years old, I met a great guy and went onto a triphasic birth control, which controlled my periods great. In 2006, I was married to that great guy and immediately stopped birth control a couple months earlier in order to try for a family. In 2007 and 2009, I gave birth to two healthy baby boys. I had no trouble getting pregnant and had a completely textbook pregnancy each time. I dealt with the heavy bleeding after their births because that's what I was used to. A couple months after the birth of my second son in 2009, I tried the Mirena IUD. It unfortunately made my bleeding worse by bleeding heavy every single day for 3 months straight until I finally couldn't take anymore and had it removed. I stayed off of any type of birth control and once again dealt with the heavy bleeding. In March 2010, I decided to try birth control again and my doctors put me on Yasmin. In April 2010, things took a turn when I had a very weird thing (or things) happen to me. I started speaking weird (was saying words fine but would put two words together or say the wrong word in a sentence so the sentence wouldn't make sense), got numb/tingly on one side of my body and my vision in my one eye got fuzzy. This "episode" freaked me out so much that I ended up going to the hospital where I received 2 CAT scans (one with dye and one without), which both came back normal. I was sent home a few hours later with the diagnosis of having Migraine with Aura. I was referred to and saw a neurologist very soon after where she looked over my case and told me that I could stay doing everything I was already doing (birth control, no preventative medication for the migraines, etc....) but she told me that if I had one more episode, the birth control was going to have to go due to a new statement from the FDA warning doctors that Migraine with Aura sufferers are not allowed to be prescribed birth control. Apparently I am not only at a risk of stroke while taking birth control but my stroke risk increases slightly with this rare form of migraines as well. Things were going good for a couple more months but in August 2010, another episode came along and I was immediately pulled off of my birth control and put onto a preventative medication for the migraines. Thankfully there was another form on birth control pills called the "mini pill" (progesterone only) which are safe for migraine with aura sufferers to be on. Things were going well for another couple months but in December 2010, another episode came (after I decided to stop the mini pill due to very erratic periods) and since I had already decided to stop the mini pill RIGHT before the episode came, I didn't have to be pulled off. It has now been over 4 months (all my episodes were around the 3 month mark) without an episode (on a preventative and no birth control) and after talking with my neurologist, she is thinking that it sounds like they were hormone related and it would be in my best interest to stay off of birth control pills completely. There's only one very small problem. Birth control pills were the only thing to help my heavy, irregular, painful periods. I of course would much rather bleed heavily than risk having a stroke, so I agree to staying off the birth control, but since not being able to be on it, my horrible periods have been back. I was given a new medication called Lysteda, but it does not work at all.

Every test under the sun has been performed (ultrasounds, blood tests, etc....) and every single one of them has come back normal. I have no cysts, my uterine lining is normal.....everything comes back normal. I can't understand it and all the doctors I have seen are baffled. I have not only seen every doctor in my practice but have also been to a second opinion appointment (which baffled that doctor as well). Finally just recently, in the beginning of last month, something happened that made me that pushed me over the edge. Me, my husband and our two boys went down to Florida for vacation and I started my period 2 days before we we left to go home. On our way back home, we got off the plane for our layover and when I stood up, I literally poured for a good 10 minutes straight. Within the first couple minutes, my jeans were soaked. I was so embarrassed . And of course most airports don't have a stock of pants to buy in their gift shops. Thankfully we were going from a warm climate into a cold one so our coats were available for me to wrap mine around my waist. As soon as we got off the plane and into the airport, I got into the bathroom and as soon as I was behind a locked door, I started crying so hard. The level of embarrassment was just too much . The next day, I immediately called my doctors office and got in a couple days later. I saw a doctor that was not my main doctor and after telling her all of my story, she recommended a hysterectomy. She told me she felt an ablation would not be successful as I am too young so would be lucky if I got 6 months out of it. She realized the IUD was not a possibility and birth control pills (the ONLY thing that helped) were out because of the migraines. She did give me a script for a sonohysterogram but when it came back normal, she gave me a call to let me know and once again recommended a hysterectomy. I couldn't believe I was at the point that something was going to be done so I wouldn't have to deal with these troubling periods ever again. She said she would write a letter/email to MY doctor in the practice and she would get back to me soon. The next day, a receptionist from my doctor's office called to tell me that my doctor wanted her to call me to set up a time to come in to schedule my hysterectomy. I guess she looked over the letter the other doctor had wrote and looked through my chart and agreed that a hysterectomy was my next (and probably the best) option. We made the appointment for this coming Thursday and here I am.....

Honestly I'm a little scared now. The decision is upon me and I'm scared. The best way to describe it is I am torn between what I think I want to do and what I think I should do. All my friends and family members are telling me I'm too young but this is the option to take away my horrible periods, so I almost feel stupid not to jump on it.

If you have any advice/suggestions to share with me, it would be greatly appreciated!

I know what you mean. People kept telling me they were so sorry when they found out I was having surgery. I had dah w/bso on 2/15/11. I am 29. It was a long time coming. I always bled very heavy. I had endometriosis, fibroids and pcos for years and refused surgery. We wanted a 2nd child. Last year I did get pregnant but miscarried. That was when they decided to run a bunch of tests including biopsy. Turns out I had endometrial cancer. I know we have different situations but I think you should have the surgery. It has been so wonderful to not bleed and cramp. Yes there will be pain while healing but nowhere near what you are used to (at least not for me). You might bleed some after but it will stop and never come back. This is my advice. I am not a medical professional, just someone that understands what you are going through. < > Hope this helps

All I can say is I had my TAH 13 weeks ago at 40.5 years old. I have what they call PCOS but was not diagnosed till 11 years ago. So from puberty I have had horrid painfull periods and went on the combined pill at 16 for about 8 years fell pg at 24 had DS 1. Then 5 miss cartridges even fall on old syle coil and miss carried then told I was in fertile so used no contraception for 5 years till I had a shock my life at 36 when expecting son 2. Then everything reared up painful and heavy bleeding again so had merina coil fitted for all to start going wrong after 2 years. I was getting periods up to 2 weeks appart and when not on period I was spotting daily. Was put on pill as well as coil that made it worse. I got so low and anemic this is what I wanted. Yes friends told me your too young for major surgery but you know what my life has proved 150% for haveing this Hyst. And I will say to you. Unless you plan on more children then have the op. Yes your young but its your body dealing with this pain and not your friends body they are not you. I regret not having this done years ago

Hi and welcome! I'm sorry you're have such a rough time. Scared is normal. Healthy even. This is major surgery, which removes a relatively large, blood-rich organ. It's a big deal. No woman comes to it casually. It's sadder - and maybe emotionally harder - when the woman is younger, but that doesn't mean that it's an unreasonable thing to do.

I suspect that "too young" mostly means "you're going to regret not being able to have more children". Sounds like you've thought through that aspect.

There's also the possibility that it may be necessary to remove your ovaries even if that isn't the initial plan. Since birth control meds have negative side effects for you, HRT might not be an option either. You could have sudden post-op menopause in that scenario. If you haven't done so already, research what can happen and be sure that you would see it as a reasonable tradeoff if things went that way.

Odds are good that the people who are saying, "don't" have never had ongoing menstrual periods that last forever and look like someone's been murdered. The embarrassment is dreadful, but anemia from heavy bleeding can dangerous.

There's also the quality of life issue. You probably want to be more active with your kids than being tethered to the toilet allows.

Ultimately you're the only person who can weigh the pros and cons of having a hysterectomy. Whatever you decide, please be sure that it's what you think is right for you. You're the one who has to live in your body!

Me, I'm looking forward to buying all new underwear with nary a blood stain to be found!

So sorry to hear your having such a bad time with your periods. I had suffered years of heavy, painfull periods and actually asked my doctor for a hysterectomy. I know you're young but you have to ask yourself 2 questions, 1) do you want any more children? 2) can you carry on with all the pain ect assosiated with your periods?
The choice for me was easy, I'm a 40yr old mother of 2. I so wanted more children but having had 5 misscarriages and an ectopic in 2yrs i decided i wanted to be steralized.
I suffered worse after and within 6 months was literally begging my doctor for a hyster. Thankfully with my medical history he agreed. I'm now nearly 4 weeks post op.
Can't say it's been an easy recovery but i haven't bled since my surgery and i'm now beggining to feel better.
If i was in your posistion and i didn't want more children i would have it done. How many years before you go through the menapause?Could you cope for all those years?You're the one who is suffering but it may also be that your family are suffering too watching you go through it every time.
Hope you make the right choice for yourself. My thoughts are with you.

I think personally for me you have to put your quality of life at the forefront. If you desire to try to have more children then I would do it now. Yes you are young but your also too young to have to live your life this way. I spent years having to live my life around my painful heavy periods and it is insanly stressful. I dont regret this decision one second. It was the best thing I could have done for myself. I know this is a scary and hard decision but you have to put yourself first and ask yourself how much longer can I stand living this way. Good luck to you

Amy

Sorry to hear you are having these problems. I can completely relate to your situation. I have always struggled with painful heavy periods and when I was 29 I had a D&c with a scope. The doctor told me then I would probably need a hysterectomy but because of my age he would like to try the other first. After talking to friends and family and hearing"your to young for that" I agreed. Even though I had already had a tubal and would not be having anymore children. After the surgery the doctor said I would probably still need one by the time I was 35. And sure enough 5 months before my 35th birthday I had one. Looking back now I really regret not just having it done the 1st time. It would have saved me alot of pain and misery. The only regret you might have is if you are wanting more children but if yourself and your husband have decided thats not in your plans then I think you will be very pleased with a hysterectomy. I am 6 weeks post op from a TAH and it has been very nice not spending any of those days curled up in a ball in bed crying from the pain. Its not a decision to make lightly but it is one only you can make. I hope you feel better soon and good luck to you. Keep us posted

Wow, you poor thing! I'm 5 days post-op after a TVH. So far I can't complain too much. I'm 29. I have actually had some people laugh and think I was joking when I told them I would be having a hysterectomy. I'm too young, too. I started my period when I was barely 9. I've always had heavy clotty irregular periods. I have a clothing disorder that prevents me from being able to take most birth control. I had the mirena iud from July 2010 until day of my hysterectomy. I hated it! I had weight gain, mood swings, hair loss, and my periods would last most the month then off a few days then back. I had nasty discharge, etc. On & on. Anyway, I agree with the other ladies, you have to do what is right for YOU. No matter what friends & family say. I wish you the best.

WOW I hate you have had such a bad experience with all this. I too am facing the some of the same decisions. I go this week 14th to talk about my surgery options. I am 32, and personally i think I am too young for a hyster aslo. But I am done with having kids and I am going to choose my quality of life instead of worrying about whether I am too young or too old for this. I figure I am too young to live this way any longer. I want to be able to enjoy life and not have to worry about pain any longer! Each one of us have to make this decision for ourselves and no one can tell you how you feel. Do what is best for you and everyone else will be happy for you that you feel better.
Best of luck this week.

I can totally relate you. I am 28 yrs old, mother of 3 boys. I have suffered through horrific periods all my life. After postponing my surgery last August, I am now back on the schedule for surgery next week. I regret not having the surgery last year to be honest. I kept telling myself that my periods would get better, yet they've gotten worse!

I know it's a hard decision but in my opinion, if you know you are done having children then why suffer any longer?

I've also been getting these awful, pitaful "I'm sorrys" from other people and to be honest I don't get it! I'm thinking "woohoo! let's get this thing out so I can move on and enjoy my life!"

Good luck to you in your decision. Prayers for you!