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Avatar universal

What Would You Do, If You Were Me? NO BRIDGE JUMPING!

I am TheUnendingCurse.

Why would I choose such a name? Because I am a rare, very young woman, with a nearly unheard of, and not yet explained medical condition. I have constant periods. Yes... constant. Every day of every week, for the last 6 months, I have had a heavy, constant period. No breaks from bleeding... ever. I bleed, have PMS, and suffer everything that goes along with a period. Every... Single... Day...

They used to call a period "The Curse" and mine is unending.

Recently they discovered, many cysts, on both of my ovaries... as well as fibroids in my uterus. A little over 9 months ago. I got an IUD... we thought that THAT would be the simple cause, and its removal would be the simple solution...

Sadly it was not the cause... nor would its removal help my condition.

"What a horrible existence", many women say. But, I'd have to say, that I live a happy life, I work out, write, and have an understanding, and very brave man, and future husband to love me. I have grown used to it, and sort of adapted my life accordingly. It's happened before, after all.

At age 13. The day after a dislocated shoulder. The trama caused me to get my very first period. My first period lasted for 6 months straight. Causing the 13 year old me to believe, for some time... that once you became a woman, that you would had your period constantly... until you became pregnant.

My mother inquired about my extensive use of pads... and after hearing my story, and correcting me... saying "Periods should only last a few days." She promptly took me to the doctor. I'd just been there for a dislocated shoulder... so he wondered what other catastrophe could be up.

I was put on birth control at 13, regardless, I bleed for 6 months... until finally, I became so uncontrollably depressed. That I just quit eating. I became anorexic... I suppose focusing weight loss, was a way for me to get my mind off of the bleeding.

I lost weight, until I was too thin to even have a period. Much to my liking, and my family's dismay. I began to get heart flutters and was forced put the weight back on.  I meet my future husband during this time of putting back on weight, when I was 14 or 15… we became best friends, and he helped to save my life.

I then lived life normally, and dramatically, as any teenager would… I had heavier, longer periods than my friends… they’d last about a week or so… but I was grateful as hell, to have them end. Period. (Pardon the pun.)

I am now 20 years old... and the dreaded, fabled bleeding (Its "fabled" as it was a much shuddered at drinking story among friends) has returned... and it's brought along with it, some friends... ovarian cysts and fibroids. WHOO HOO!

They have put me on different birth controls... stronger birth controls... I was even on TWO birth control pills a day, for a few months. And still the bleeding still couldn't be stopped. I am now, going to try Yaz, one pill a day...

I was on APRI before... I don't take a week off either. I just take hormones constantly... still the bleeding won't stop. For 6 months, no break from birth control pills, no week off. Any break from birth control just causes it to be heavier. THIS amount of birth control would cause most women to never have a period. It can't even stop mine...

When I got the IUD installed, the guy didn't examine me. He cut my cervix with surgical scissors... on purpose. To make insertion easier... I was in immense amounts of pain. And had to go back to the hospital that day... in a wheel chair. I was given hospital style pain killers, and sent home. To lay on the couch for the next 3 days.

My gyno, said that putting an IUD in my uterus... as it is tilted backward, would be very difficult. So if the guy who put it in WOULD have examined me... he would have known that. And perhaps, I would have been saved some pain.

I have wicked bad pains in my sides now, basically the worst period cramps you'll ever feel... and am dizzy and need to take B12, and Iron because of the blood loss. I'm always tired... and just feel drained, all the time. I still work out... I go to school now.

I’ve kept all of this from my friends, due to the fact that I despise being a pity case… and many peoples more than judgmental views against IUD’s.  I’ve told one or two people, only to be treated as if I DESERVE to bleed constantly. Just for getting an IUD…

I had to quit my physical job, because my boss threatened to fire me, if I couldn't do the work any faster. I didn’t bother telling her about my condition… she was the type who wouldn’t care in the least.

I've had all the blood tests, swabs and pee tests in the world. And still they can't stop the bleeding. I’ve never bothered telling those outside of family.  As it’s a rather gross, unheard of and lonely subject. Even my pharmacists have treated me badly. For getting large amounts of birth control all the time.

My explaining that I bleed constantly, and take two pills a day. Cause many of them to look at me like I am an alien. One even found amusement in my misfortune…

That's my story... if you'd like to hear about the other horrors of my uterus... you may ask me.

I'm so thankful to have a place, to talk about this... and perhaps find someone who can relate with my distress.

81 Responses
Avatar universal
I have to wonder about the competence of the doctors you have had so far. I do not think they are treating your problems well at all.

If it were me with those problems, I would have opted for a hysterectomy, maybe keeping just the cervix and one ovary, for hormones, but it would depend on the size and type of cysts the ovaries produce. I am not suggesting this is your solution, but it appears your repro system may not be able to be "normal".
Avatar universal
Cutting your pelvix to put in a DIU?? I don't believe what I'm hearing.

It doesn't sound like your doctors know what they are doing.
I don't know if you are patient in a small gynaecological clinic, but if that is the case, I would advice you to go to a gynaecologist in a HOSPITAL, who is specialised in complicated things like this. You don't have something every doctor knows what to do about. Clearly.

If you suffer from a B12 deficiency, you should be on B12 (+vit.C) pills. After a while your B12 level should be checked again, to see if your body indeed takes the B12 from the pills. Very important! Because if not, you need shots instead of pills. I have had the same situation, and after filling my B12-'depot' with shots every day for 15 days, I am now taking 1 shot every 4 weeks. I can tell you, you will notice a huge difference if your B12-level goes up; it's great. No more constant tiredness, no more anxiety and depression. It's lovely, you can look forward to that at least!

Wicked pain in your sides can indicate all sorts of things, but really, you need a better doctor. One who is also a surgeant, preferably.

Anyway, not more I can say about your situation, just: the best of luck. And keep us informed!
Avatar universal
We don't have a gyno in the hospital... we only have one actual ObGyn here.

And every doctor I have talked to, has refused to refer to me to a gyno, in the bigger city, only an hour away from us. My GP, may refer me, but he believes that they wouldn't know any more than my gyno here. My gyno here is very good. He's trying everything he knows.

But frankly, NO ONE around here has heard of constant bleeding. I asked him, what we would do, if these new YAZ pills don't work, and if the IUD's removal, didn't stop the bleeding. He said that he will moniter me, and talk about it, if it comes to it.

I think he's trying not to scare me... or upset me. I only 20... :( I'm very young... too young to go into menopause. I don't think they want to give me a hysterectomy, unless it's the very last resort. As the bleeding doesn't effect my life, aside from sex, obviously... and working...

Women can't really complain about their periods, messing up their working abilities. And I don't like to tell my employers that I've been bleeding constantly. It's awkward, and grosses people out.

I see my gyno again in 4 months... but the reception at my doctor's office is very mean. I called 3 weeks ago. I wanted to see when my referral appointment was. It was already supposed to be made, I just needed the time and date.

The receptionist asked what the referral was for. I said "I'll discuss it with the doctor". She said angrily (as I always refuse to tell her what my doctors visits are for. I only say if they are urgent or not.)

She replied angrily... "We'll if you want me to put you on hold, while I look through 200 referrals, be my guest."

She put me on hold for 10 minutes... and came back on the phone, and stated triumphantly. "It's to get your IUD taken out." I said... "No, its to discuss things with the doctor. I never agreed to its removal."

Receptionists aren't required to know the precise details of your doctors visits. And her, being rude, and forcibly finding out, was just unprofessional. ESPECIALLY when I told her, it was private, and that I'd discuss it with only my gyno.  

I was going to tell the doctor... but the news of cysts caused me to forget. Sadly... I'll tell him next time.

Don't worry though... I called back later in the day, hoping to catch some harrassment on a recording device. I called, and I asked her what the referral was for exactly. She said, "I don't have the paper work infront of me, but it's for you IUD, to be removed."

I'm not sure if this was the same receptionist as I'd talked to before... if it's not... then they all know. Which isn't good, because it's common knowledge here, that receptionists yack. We are a VERY conservative small city. I don't need everyone knowing about reproductive issues, and choices.

I'm not ashamed... but I don't agree with having my medical history becoming the conversation of the day. Unless I choose to tell people.

Avatar universal
Dr. Awesome was THE FIRST doctor to suggest me getting an ultra sound. In my first one, we were thinking the IUD was the problem. So we didn't look too closely at my ovaries. And found some fibroids in my uterus. The IUD is perfectly in place.

I went in again a month later, for a second ultrasound...That's where my little cysts were found. I have atleast 4 on each ovary. Small but very painful. So we are leaving the IUD in. For now.

We only have 2 gynos in the city... and one will only service pregnant women, and turns away women he thinks are "sluts" I've been told. I've only been with the man I'm marrying... so I think I'd pass inspection. Lol...

The other is my gyno. Let's call him Dr. Awesome. He is trying everything he can. As well as my GP. They just don't know what to do... I'm afraid. My GP, knows me and my family very well. He actually teared up alittle when I told him of the dizziness, and that after 5 months, I am still bleeding.

I go see him in a week, to find out what all my blood tests mean.

We had NO gynos in my small city, at the time I got the IUD perscribed and put in. The gyno, let's call him Dr. Ouch. Came into town that day, and after me begging for MONTHS to even be referred to a gyno, for the reasons of getting an IUD, I was finally allowed to talk to him.  

I was 19 at the time, and had never had a child. And very much, wanted to take every precaution against becoming pregnant, before, and if ever I decided I wanted children of my own.

(I doubt that will ever be an option for me... given my history.)

When he put it in, I walked into a random room, and he didn't even have his tools ready yet. I layed there with my legs up for a good 10 minutes. Then I was scared and tried to talk to the nurse a bit. He got mad at me and snapped at me, "Are we going to do this, or not?!"

I shut up, then he said, "I'm going to make an incision, in your cervix... you may feel some cramping." I started to cry... the nurse told me "You aren't supposed to be able to feel your cervix." I assure you, I did.

SNIP... pain... I then began to cry. It was over with quickly after that. I felt very sick, and very soar... and it felt like someone had punched my in the uterus... went home, and layed on the couch. And returned to the hospital... that night, in need of pain killers.

No one, would actually examine me, for months after, they just gave me pain medication. I couldn't feel the strings, and thought it had fallen out. No one seemed to want to look up there. I felt better... and then the bleeding started...

Everyone just told me, the pain was because I'd never had a baby before. They lectured me, on "That's why we only perscribe IUD's to women who've had children."

One very mean, and bitter doctor, lectured me on the never having had a child thing. Treated me like I was just after pain medication. Smirked when I started to cry, because I didn't want to bleed anymore. Refused to refer me to a gyno in the bigger city.

Before refusing she asked me "Well WHY do you want someone there, and not here?"

I told her, because they were alittle more liberal... and I'd been treated very badly by doctors here... and nurses. She told me "Well it's kind of a waste of the medical systems money, for you to go see, doctor after doctors... isn't it?"

She said, "Maybe you have a bladder infection. Have you been tested?"

I told her I wanted a second opinion.

She said, "Well I don't think its good for you to get a second opinion, I mean, you are a very strange case, and alot of doctors will have different opinions, just stick to one doctor, and listen to him."

I told her my cervix had been cut. She acussed me of lieing. She said "Well I've put IUDs in, and NEVER have heard of a cervix being cut... I don't think you understood the situation... What did he use to cut you?"

I replied that I couldn't really see past the blanket, what he used to cut me. He just told me, he was going to make an incision.

She said, "I don't think you really understand the situation... I really don't have time for this, I have other paitients to attend to... stick with one doctor, I'm sure you'll live."

She left... and then as I was getting my coat, she came back.

She smirked and chuckled, "Well let's check your blood pressure, just to make sure that you aren't dieing."

She checked my blood pressure, refused me a referral a second time. Saying "Well I haven't examined you... and you should just stick with one doctor, they are all confusing you."

She left, and I walked to my car crying. She didn't help me at all, she just wanted imformation... and did nothing, but insult me with it. I felt, because of her smirks, and mild chuckles and snorts... that she was getting some sort of amusement out of my pain.

She is a very mean doctor... alot of girls don't like going to her. Alot of people treat my differently, like I am scum, the moment I say IUD.

But what am I to do. They won't let me go somewhere else... I'm stuck here... and no one is too concerned about the bleeding... they just let me go a few more months, a few more months... give it a few more months.

I had to quit my job over this. I've told THEM ALL that I can't work, or keep a job because of this. I want to go back to college next year... nobody cares.

I almost feel like an experiment to them. To everyone except for Dr. Awesome and my GP... I think they just like to leave it, and see what happens.

Avatar universal
I don't know where you live, but it seems that the best wedding gift your future husband can give you is RELOCATION to an area that has better doctors for you.
483733 tn?1326802046
What are they doing about your cysts?  You need a referral to a gyn in a different area and at the very least a laporascopic look and see should be done so they know why you are bleeding.
Avatar universal
I know you think the IUD is not the cause of your bleeding, but I had one (the non-hormonal one) and it caused the same symptoms in me. The bleeding stopped about 6 weeks after I had it removed. I am a bit older than you and have had kids, but consider that the IUD may well be the cause of the bleeding. You can not know until it is out.

There is also a procedure that they can do to get rid of the extra lining of the uterus that is causing the bleeding. It is called Endometrial Ablation. Look it up and see if you can find a Dr who might do this as a treatment. Bleeding like this is not normal and there are several things a Dr can do to treat it besides give you hormones.

It really sounds like you need to find a different Dr in a different area other than your small town.
Avatar universal
Sincerely... I wouldn't mind getting it out. But they don't want me to get pregnant, and complicate things. There's no way to know if my birth-control pills are working or not... I don't like the fact that I am refused access to another gyno.

We'd never move, beside the medical issues, I love it here... future hubby makes excellent money here. And it's absolutely beautiful. But I doubt I'll even want to THINK about getting married... not until this is all solved. Period on a honeymoon, doesn't sound like a fun vacation.

Besides, I won't get married until I finish my education. Which has been put on hold thanks to my medical issues.

The IUD would have been too hard to remove in an office. It's removal is ACTUALLY the reason I went in. Lol... and the ultrasound is what found my cysts. Thanks to my tilted uterus, and the strings being lost inside of me. It has to be removed in an OR. so we're gonna see what happens.

My uterus doesn't like me... lol.
Avatar universal
Are you saying your DIU is still IN?!
Am I correct when I summerise:
The bleeding started after putting in the DIU and now you/your gyn doesn't want to take it out, because with all the bleeding birthcontrolpills don't work?? That doesn't make sense.

What DIU do you have? Some (Mirena) is notorious for being really hard to put in and risk of puncturing the uterus.

I live in Europe. I assume you're in the US? I believe it is possible there aswell to just pay in cash and go around the healthcare-system / insurance / referrence.
Because that would be my advice:
'Invest' 100 or 200 (?) dollars in your health. If you don't have it, ask your man to loan it to you and pay him back. Look up the biggest hospital in the biggest city you can get to, check by internet the gyn there, make an appointment (if they ask questions on the phone, say it's a 2nd opinion and tell them you've been bleeding for 6 months and in pain), go there, tell the whole story, get yourself checked out.
Have that gyn write down his findings to take with you and reading that, I'm sure your GP will refer you to that one in the future. That money is well spend and you may earn it back when you can get back to work. ;)

Other option is to take a daytrip to that same big city and walk into the emergencyroom of that hospital. Tell them it's been bad for 6 months but today you are in a lot of pain suddenly. If you are there in the ER, they are obliged to help you and will send you to a gyn there. Nobody can send you away or ask for a reference.

I am saying this because I expect your gyn to have made a mistake and either not have the knowledge or the balls to admit it. And Dr. Awsome might be awsome, but doesn't know what to do either. You need someone with more knowledge.
You are NOT treated well now. This is clearly ruining your life so take action.

Good luck!
Avatar universal
It's a copper hormoneless IUD. Health care, where I'm from is free. As it is where you are.

I DID tell the doctors, that I had little desire to ever have children. So whatever treatment needed wouldn't be an issue for me.

But I certainly don't want them neglecting me, just because I don't want children. To the point that I am unable to have any, should I ever change my mind. Or to the point of just letting me bleed on into eternity.

The health of my reproductive organs should STILL matter. Even if, I may not apply their functions. Because my uterine health, is MY health too, and effects my life greatly.

I've also been treated badly by, and lectured by doctors, when I tell them I am most likely never going to want children of my own. And if I did become a mother, I'd like to adopt an older child.

And I feel as if one doctor, the very rude female doctor especially... was trying to in some way PUNISH me.

For not wanting children of my own. It's sort of like... "We'll if you won't have babies with your uterus... you don't deserve a uterus. So I won't give you a referral, or help you in any way... Bleed you uterus wasting YOU!"

Which I find is ridiculous...  that I could actually get a vibe like that. I never thought the desire to adopt, over have children of your own, could offend someone so much.

It's all ridiculous. In this very judgemental, and veiw forcing place. Anything I do, I just can't win.

Whether or not I have children, or desire children shouldn't be the issue with the supposeably, unbiased doctors. My health should be the only issue which should concern them. I am in university classes to work in the health feild.

And if I had any biases, about other women's lifestyles... I wouldn't be going into it. Because, I'd truly have no right, to push my thoughts, and wants, on them. PERIOD.

But I'm sick, and in pain now... so... what else could I possibly do, but do as they say. I'm stuck here. It's this treatment, or none... and atleast, I'm starting to feel better.
Avatar universal
What worries me, is... as risky as a future pregnancy could be... could letting me bleed like this, eventually kill me? Has a woman actually DIED from a period?

I should have got the damn thing out. But, what if I DID have a baby... would it be able to be healthy? In a uterus such as this? I fear that one, from me, could be unhealthy in some ways, or alot of ways. I shudder at the thought.

So... I think, I'll just avoid it, as best I can. And adopt a kid who needs a home. Or... just get a dog and a cat... and maybe a rabbit.

But who's to say I'd ever have a baby anyways... given my history. :S And if they are so worried about it... why not just tie my tubes? Or something? Wouldn't THAT make more sense than letting a woman bleed?

Or just use rubber boots! :P I mean, if they don't want me to be pregnant... and they don't want me to bleed. Give me another option, which is HEALTHY, and EFFECTIVE. If both are SO risky... why not eliminate both risks. With one swoop.

All situations are bummers... but letting me bleed is the most bummer.

Avatar universal
If your uterus is that problematic, then hysterectomy may be the most reliable cure.  That means removing the uterus.  Tying the tubes may prevent pregnancy, but it will not stop the bleeding.  Anemia from blood loss can cause health problems throughout the body. Untreated/uncured anemia can be fatal.  If your body is not replacing lost blood at a rate fast enough to keep pace with the loss, that is.  I do not know just how severe your problem is.  Any ongoing bleeding is SERIOUS and your doctors are just not "getting it".

If you did lose the uterus but kept at least one ovary, you will still live a normal life without early menopause, but of course, pregnancy would be impossible.  Adoption is possible if parenthood is important to you.  

If I were there, I would be slappng your doctors silly.  You have yet to meet Dr. Awesome.  They exist, but not in your neighborhood!

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