Endometrial Ablation: too young to not suffer, apparently.

I'm extremely frustrated.

Ever since my periods started, they have been painful. As time went on, they got worse; now, at age 20, I literally go into shock every single first day and end up fainting on my bathroom floor. I get feverish, chills, dizziness, pounding heart, extreme pain to the point of vomiting, disoriented, and aforementioned fainting. I cannot stand because of the pain up through my back and clear down my thighs. Painkillers last for maybe 1 hour tops before wearing off, assuming I don't vomit them up. Heat packs do nothing. Ibeprofuen does nothing. I've been on BC pills first to try and lighten them, and then just to skip it entirely, to no avail. They come anyway, with such force I cannot even describe it.

As of right now, none of my doctors can give me a specific reason for this. Severe periods run in my maternal family; almost everyone has a tilted uterus or some such and my mother experienced such severe pain even after 3 pregnancies carried to full term that she had an endometrial ablation done.

This operation took her horrific periods down to light spotting and slight crankiness. Every so often she has light back pain, but nothing like before.

I want this surgery. I want this so that I can stop losing days of my life in such pain I have actually considered killing myself in the midst of it just to stop the agony. I am 100% serious in that I cannot live with this pain anymore. This surgery would help so, so much.

But no one, and I mean not one of the six doctors I've consulted, will even discuss it with me on the grounds that I am too young to have a procedure which will stop me from being able to bear children.

I do not want children. I don't like children, and I think my personality would make for a terrible mother. I have poor health; pregnancy would be unwise for me regardless. I have not wavered in this stance since I was 13 years old; I'll be 21 in a month. Should I ever for some reason change my mind, I'd adopt anyway, because I have a lot of genetic disorders I don't want to pass on.

And despite this, my doctors are telling me that I must continue to suffer like this until I am thirty years old on the grounds that I might "change my mind." I am being denied a critical treatment because apparently, even though I am an adult, I am not allowed to make such a decision about my own damn body.

Does anyone else find this completely and utterly insane? It's to the point where my parents are considering helping me get the procedure done in Canada, because no one in the US is willing to GIVE ME WHAT I WANT TO ELIMINATE MY EXCRUCIATING AND DEBILITATING PAIN.

I'm angry and in pain and would like to know if anyone has an experience with this sort of outright denial of treatment.

Have you considered alternative options e.g.,

the pill
the depo injection

?

i appreciate that your periods are bad... but does sound like a rather extreme measure to resort to before all other options are exhausted...

I feel your pain--literally. For years I was on the pill non-stop..not even taking the placebo week. This totally stopped my periods. No period at all for 3 years. It simulates pregnancy...albeit a long pregnancy. I never really wanted kids, was told I couldn't have them, wouldn't be able to carry full term if by chance I got pregnant. I got pregnant after coming off them..twice. At age 30 with 2 kids I still had to fight tooth and nail to get a hysterectomy. "Too young", "may want mor kids", blah blah blah. I did get it, though. I had to petition the board of directors at the hospital to "allow" the doctor to do it. Stepping outside of situation for a minute you can see why they won't do it. Once you meet the love of your life your feelings on kids may change (that's what I was told and I was already married). However, until they experience pain like that, the physical horrendous pain, they will never understand. http://www.endometriosis.org/ This may give you information...though you probably have all the informaiton you need already. If you have, when not in the midst of the pain and agony of your period, thought through never having biological children, thought through the risks of surgery, etc, thought through every possible treatment scenario and still want your surgery, write to the head of gynecology at the local hospital, write to the board of directors, write to the CEO. Be the squeaky wheel. If there are support groups in your area, enlist them as your champions to help your voice be heard. Best of luck to you!

Has any of your doctors suggested a laparoscopy to you? Your description sounds very siilar to what I used to go through. It started for me with my first period and got progressively worse and worse to the point you describe. At 23 I had my first laparoscopy. I had a terrible GYN, who said there was nothing wrong (after the scope)...I suffered for 5 more years. At 27 I had another scope...different doctor. She found severe endometriosis. When endo is found during a scope, the doctor is able to do procedures to remove endo lesions. I had this done three times. With much relief for up to a year between them. At 32 I had a hysterectomy...the most extreme treatment for endo. It has been 7 years and I have only had a few very minor problems. Minor pms type symptoms occasionally and an occasional cyst. My doctor left one ovary...the one that had less endo growing on it and fewer cysts (another problem I had).

As for an ablation...there are some important things to consider...things it sounds like your docs have not told you...

From WebMD...
How Well It Works

Most women will have reduced menstrual flow following endometrial ablation, and up to half will stop having periods.1

Younger women are less likely than older women to respond to endometrial ablation. After an endometrial ablation, younger women are more likely to continue to have periods and need a repeat procedure.

Young women may be treated with either gonadotropin-releasing hormone analogues (GnRH-As) 1 to 3 months before the procedure. This will decrease their production of estrogen and help thin the lining of the uterus (endometrium).
Risks

Problems that can happen during endometrial ablation include:

• Accidental puncture (perforation) of the uterus.
• Burns (thermal injury) to the uterus or the surface of the bowel.
• Buildup of fluid in the lungs (pulmonary edema).
• Sudden blockage of arterial blood flow within the lung (pulmonary embolism).
• Tearing of the opening of the uterus (cervical laceration).

These problems are uncommon but can be severe.


Have you tried any hormone treatments (like Kim suggested)? Most birth control pills lessen the flow a great deal...and some stop it completely (depo-provera). Something that lessens the release of progesterone would prevent build up of the endometrium. Something that lessens estrogen would prevent ovulation which in turn would lessen progesterone production.


While it is true that right now (and for past years) you do not want children...that really could change. It did for my Aunt, she NEVER wanted children...and was very vocal about it...from an early age (teens) from what I am told. At 28 she married for the second time. My uncle already had 4 kids...my aunt had 2 of her own (happily) by the time she was 33. And now she says she doesn't know why she didnt want kids before. And my attitude changed also...less happily. I didn't want kids either. Then I had a hysterectomy. 3 months later I was suicidal...the surgery wasn't the only cause...but it was a huge factor, and what got me to start therapy. Your other health concerns may prevent you from changing your mind...and you may just plain not change your mind...but most doctors aren't willing to take that risk.

A laproscopy sounds like a good next step to me... you'd know for certain if there were any signs of it.
Reading your post was like reading my experience too. I'm not even 'allowed' a laproscopy nevermind any ops to get rid of anything... although I wouldn't want to be infertile. I used to really love the idea of having kids, I 'knew' it'd happen, now I'm not sure that day will come, but I'd hate to want to and not be able to.

Anyway... I used to get violently sick with the pain too, I even ended up in hospital a couple of times (and still they ouldn't do anything... "too young" they said... I'm 20 too by the way) I still suffer through the pain, but it's less often now as I've been put on a progesterone only pill (Cerazette). It was awful the first 6 month, I still got horrendous pain and heavy periods (a lot more often actually) but it was worth it in the end. Now I don't have periods at all (except recently when I lost someone and went through a REALLY tough time, think the depression and stress had an effect on that) and the pain has eased quite a lot... I still get it sometimes, but nowhere near as often.
So yeh... Cerazette (or the depo injection) and a laproscopy might be worth a go...

I'm sorry you're having such a hard time too... I hope it works out for you. Let us know how things go?
Take care,
Molly

..+ (((((((((((((((((((Kali))))))))))))))))))))) ((((((((((((((((marci)))))))))))))))))) (((((((((((((((((((serafim))))))))))))))))

Wow I found someone with a worse period than me? Amazing! I never got to the point of passing out, I have vomited from the pain a few times though. But listening to yours, its sounds much worse. Maybe you could try depo provera.

I've been on four different kinds of the pill now, as that was (obviously) the first method of treatment. Unfortunately my hormones appear to be persistent, because most of the ones I've tried, even skipping the placebo, my period came full force. On one brand, it actually was significantly worse that I was without it.

I have a very very very severe needle phobia, and therefore cannot do the injection or IV kinds.

Today I ended up in the ER with what was apparently a ruptured cyst; I'm really angry about it, because I'd been suggesting to no less than 4 doctors that this was a possibility, and they refused to do anything more than a very vague manual exam. Because of this refusal to do an ultrasound (they claimed since they couldn't feel anything, it was a waste of time), I ended up rupturing a cyst and experiencing even further pain.

Due to a genetic predisposition to cancers (breast, lymph and colon) anything with high-level hormones is something I'd like to avoid. My extended family is prone to developing cancer young (my second cousin passed away this year, having discovered her cancer when she was 34.) Further, the BC pills interact with the medications I'm given for Major Depressive Disorder and General Anxiety Disorder.

I've been through a lot of BS from doctors this year relating to this, and all four of the doctors I've seen were female, so you'd think they'd at least get it. But I've been repeatedly dismissed, and now look. I ended up in the ER.

I want at least ONE doc to take me seriously and trust me when I say that I know the consequences and have done the research; I'm young, not stupid. And since all the methods we've tried have either done nothing or made it worse, I'm at my wits end.

> I want at least ONE doc to take me seriously

i'm sorry that you feel that their reluctance to perform this operation is due to them not taking your pain seriously. it really sucks to feel that people aren't taking our concerns seriously.

> and trust me when I say that I know the consequences and have done the research; I'm young, not stupid.

i'm sorry that you feel that they are treating you like you are stupid.

many people who are in their 20's feel like they never want to have children or that if they change their mind on that they would prefer to adopt. many of those people (though not all admittedly) change their mind as they approach 30 or 35. there is some saying about the body clock ticking... and there seems to be some truth to that. 30 or 35... that would be half your life away... and if you did change your mind and sued a doctor for performing this operation when it may turn out (in hindsight) that it really wasn't a last resort... well... a doctor may well be very concerned about this and hence reluctant to perform the procedure even though they do understand that your pain is serious and that indeed you are not stupid. there is also the point that it is very very very very very hard to adopt and many people find they are unable even though they feel very desperately about having children.

there are risks with operations such that people prefer not to perform them if at all possible. risk of infection. risk of not waking up under general anesthetic etc.

how about attempting to get some treatment for your needle phobia in order to give the depo a go?

I agree with the doctors (and kim johnson). =/
I think that you should try all of the other options before making your mind up about the surgery. Needle phobia vs making a decision that will severely impact the rest of your life... I'd go for the needle.
I'm 22, I'm young as well, we're so young that our bodies aren't even fully developed yet. And you will feel the biological clock ticking in your head when you're closing in on 30. 3 years ago, I HATED kids - but now.. I look at a screaming baby with vomit all over its face and I think "awww i want one". I think it would be a bad idea to make such a definite decision before having tried -all- of the options.

Actually, I was on depo provera some years ago. I was only on it for about 8 months, but I didn't get my period (and no symptoms) for TWO years.
Please try that one. You could take benzos before being injected, I'm sure the doc will help you with that.

I understand your frustration though x.x

you don't even have to have an injection. Ask your doc about Cerazette (or I think the 'non brand/medical' name for it is Desogestrel). It's the same in tablet form (and the pills are sooo tiny. But talk to your doc about it... my body tried to fight agsinst it too... I bled and was in pain for a good couple of months and then on snd off for few more months. But, it did eventually settle and it's made such a difference. I was a huge mess before.

Hi,
I am sorry to hear what you are going through. I don't think it's fair in this country that doctors get to dictate based on their conscience what they think you will want in 10 years. It's very paternalistic and you should take your case before the hospital administration - insist on having it reviewed by an ethics committee.

My husband and I wanted to get him a vasectomy b/c we don't want kids and all of the hormone contraceptives give me terrible migraines. I was told that no one would do it, but I found some one who would. We haven't done it yet though.

As for the hormones, I found a more local approach that didn't cause migraines. I use the Nuvaring continuously. I had cysts on my ovaries, too, that would rupture and it was awful. Likely, I have endometriosis, but the Nuvaring has settled everything down.

I hope you get it figured out. I would try an academic medical center. There is likely to be doctors there with the most up to date knowledge.

Best of Luck, and make sure you're not anemic!!!

I always knew i never wanted kids ever since i was 11 y/o.. i didnt want to pass on my issues and mental problems to another innocent human being just to fulfill a "wish" to be a mother..it sucks to know that a lot of people dont learn from their mistakes..and keep "hoping" that having a kid would give them a chance to reinvindicate themselves..from a horrible past..but most of the times it doesnt happen that way..kids are not "guinea pigs" to make out for what were missing in our lives, nor theyre substitues for loneliness and someones empyness...having a kid its a HUGE RESPONSABILITY!! and i think people should take a course or trainingaon how to raise a child!!!!!
Good luck on your surgery..and im with you on not having kids..
i always knew..and havent resented my desicition ever since..im happy i did it..i saved my own at least..from this misery..thanks! bye!!

Have you every had your hormones tested because it sounds like you body is very out of balance. If you can, and that will be as hard as the surgery because you are so young, but get your hormones tested in luteal phage of your cycle (days 19, 20, or 21) since that is when you are having the most problems! Get your estrogen, progesterone, and free and total testosterone checked! You probably were not on the right BCP, you need one with higher estrogen, 50mg...and lower progesterone because your body is used to higher estrogen!

Have you ever tried progesterone cream because your body is making to much estrogen (estrogen dominance) which is causing the excess bleeding and the cysts are causing the pain, I think causing your progesterone to be too low. You can buy progesterone cream over the counter in pumps or tubes. I would buy a tube and use a pin size amount maybe twice a day to start, in the afternoon and at night because it might make you sleepy..progesterone is the pregnancy hormone and should be at it's highest during the luteal phase of your cycle right before your period. If this works then try to get a prescription for progesterone sublingual pills from your doctor because the cream stays in your fat cells for too long, the pills are out of your system within 24 hours! It's definitely worth a try! Check out this chart here to see the menstrual chart http://www.womentowomen.com/menopaus...dominance.aspx. Please feel to message me if you have any other questions!

Something else, you may be anemic so if you are taking iron you also need vitamin A because iron depletes vitamin a which can make the bleeding worse. There was a study where women used 100,000 iu of vitamin a to decrease excessive bleeding but they used pure vitamin A and not betacarotene which is mislabeled as vitamin A and has to be converted in the body to vitamin A. The problem is that most people DO NOT convert it properly so they still remain deficient in vitamin A! I use Twinlab Vitamin A because you only need a teaspoon full to get a good dose and it is the best brand I've tried so far! I put the oil in my OJ and drink and my periods are no longer extremely heavy.... I had the HEAVY PAINFUL PERIODS GROWING UP TOO and they continue and I'm in my 40's! Also get a B complex vitamin and fish oil (for inflammation) to HELP!


Best Wishes,

TJ