When people care more about your uterus than your well-being

So, it seems i'm among the unlucky women who got diagnosed with endometriosis. To be more clear, with an endometrioma (chocolate cyst) that has made my life a hell for the past 4 months because of the constant pelvic pain. The diagnosis was confirmed by two gyns via ultrasound and i got a blood test to exclude the possibility of cancer. I was scheduled for surgery but for the moment i refused and started BC pills in the hope that it will shrink it and i won't need surgery (i'm shit scared of surgeries) - which is very unlikely as i have been told.

But the most infuriating was some of the reactions i got. My FIL and two of our stupid neighbors started almost yelling that "OMG!!! You won't be able to have baybeees!" like the end of the world was coming. Other people "kindly" advised me to get knocked-up because that is the miracle cure for endometriosis and some accused me that i got this upon me by not getting knocked-up in my 20's.

These idiots really pissed me off and especially FIL, who is not even interested in kids besides the Kodak moments. The thing is that some of these people saw me in pain and they know i have been struggling a lot to go to work and finish my studies while sick. But all they care about is a fucking damn imaginary baby.

Besides that, they are also extremely stupid as pregnancy is not a cure for endometriosis and not crapping out brats in my 20's didn't cause this. There are lots of women with kids who have the same disease. The positive thing is that the doctors were very professional and mentioned infertility implications just as an informative fact. I told them i didn't want kids and they were like...ok, your personal decision. Still, i'm so scared because of it, especially the surgery thing. If any of you had this and maybe know other ways to heal, do tell.

Ugh. Sorry you're going through this. Those responses are uniformly fucking awful. Thank goodness it's something that HAS a treatment-- better to lose an organ than your life!

(I wish I could suggest some non-surgical options for you, but I don't know of any. :/ )

I'm glad it isn't cancer. Hope you're able to find a non-surgical approach.

Screw those people. Know of someone with the same issue who found out when her mother brought her to the doctor at 16 because she hadn't started her period. Would these wise doctors suggest a pregnancy at 15 would have resolved this?

Then the same idiot doctors told her she couldn't be pregnant. Around age 30 when the idiots were telling her she needed a hysterectomy she became pregnant. And then a second time.

Those bingoes were really irritating because these people just dismissed the fact that i’m in pain and it’s not fun to go around while feeling like you have constant period pains. And about getting pregnant, you can get pregnant even if you have endometriosis. It’s a cause of infertility but most of women can still conceive while having it, and being pregnant does not cure it but it just ameliorates the symptoms because your periods stop. Well, I can do that by taking the pill, hope it just works.

The surgery would be done via laparoscopy (it’s the same procedure as in tubal ligation) but I’m just a huge chicken and I’m afraid of it. And don’t get me wrong, I’m still CF but I would prefer keeping my ovary if possible.

I was roaming around internet to see people with the same disease and it’s amazing how unprofessional some doctors can be. There are lots of them who actually think that pregnancy is some kind of a miracle cure and most of the sites are obsessed with fertility stuff. Or saying that women get this condition because they don’t give birth. I would really like to find something treating this condition as a normal disease and not panicking about infertility. In fact, these cysts could be really nasty as they lead to ovarian torsion, ruptures and a small percent could become malignant. Those I’m worried about, not infertility.

I think is so hard to find a decent approach with diseases of the reproductive system because almost all the stuff seems to focus mainly on fertility. I do appreciate that my doctors kept it professional but it’s disturbing that they rushed to surgery. The first one even refused to prescribe me the pill saying that it’s useless, it won't cure it. But why not give at least a try? Also they did mention that it’s not 100% sure what the cyst is, unless they get it out and analyze it but given my circumstances is very unlikely to be malignant.

blackpearl, don't be afraid of the laparoscopy. I had it done years ago when they removed my uterus (fibroids). It's truly great. There is almost no pain because you don't have large cuts, just 3 small incisions. The only annoyance is the gas after the surgery, because they pump you up with gas so they can move the robot around.

Blackpearl, here is a link to show to your relatives and any other breeder head who thinks that pregnancy cures endometriosis - it does not.

http://endometriosis.org/resources/articles/myths/

Specifically:

Quote
Endometriosis.org

Pregnancy does not cure endometriosis

Fortunately, the myth that pregnancy cures endometriosis is slowly disappearing.

However, it is not disappearing fast enough! The reality is that pregnancy—like hormonal drug treatments—may temporarily suppress the symptoms of endometriosis but does not eradicate the disease itself. Therefore, symptoms usually recur after the birth of the child. Some women can delay the return of symptoms by breastfeeding, but only while the breastfeeding is frequent enough and intense enough to suppress the menstrual cycle.

I hope that you get better regardless of treatment options that you choose. If you can, try to visit a holistic doctor and get their opinion, who knows, maybe it will save you from surgery that you are not excited about.


Also, the idea that endometriosis is a guaranteed infertility is not accurate. From the same link, here is it:

Quote
Endometriosis.org

Endometriosis does not “equal” infertility

Too many young women are given the impression that having endometriosis invariably means that they will become infertile. This is not the case, and most women with endometriosis do go on to have children.

Breeders are liars and they have been busted in their own lie! If they claim that a woman cannot get pregnant if she has endometriosis, then how do they figure that having a baby will cure it? One has to get pregnant before the baby shows up. They are using someone's pain for their own gain!

Quote
Endometriosis.org

Douching does not cause endometriosis

No, it does not, but, being around a bunch of breeder douchebags causes many other problems, for which, there is no need for description...

I went through the same thing.. with the 'Oh you won't be able to have baybeeees' and my MIL trying to tell me to have one just to cure the endo. Where do they get this crap?
I had a hysterectomy at 40... I actually requested it. Best thing I ever did for myself. I am scared of surgical procedures too but it wasn't that bad and the pain I had after surgery (for about 3 days) was nothing compared to what I had with the other stuff going on in my 'parts.' Never regretted it.

Piping up to say I had an LAVH when I was about 32. I didn't have endometriosis, but I had the terrible cramps and irregular, unending heavy periods that just refused to be controlled by the pill. Finally had enough and got the surgery. I was scared of surgery (and still am!) but it really wasn't that bad. I had to get through that little bit of unpleasantness but now I've had years of period (and pain) freedom! Whee!

I did keep my ovaries because I didn't want to go into sudden menopause.

I do agree that it seems like if you have a GYN problem other than pregnancy or trying to get pregnant, the medical community doesn't have very satisfactory treatments for that. It's BCP or surgery basically. Maybe there just isn't anything else and I'm being unrealistic.

You have to decide what's best for you and maybe the pills will help. They did help me for a while but then stopped working and I got fed up enough to just get the surgery. I'm just trying to encourage you not to think of surgery as the ultimate scary boogeyman in case you get to that "fed up" point.

@Peace: The gas part is the one i'm not comfortable with and also the whole anesthesia thing. But if i have no choice i'll do it. It's much better than just suffer because of it.

@Techie: There is lots of good information about it now but you can't really have a logical conversation with these people. For example, my FIL is the kind of person who thinks he knows everything and everybody else is wrong. He and his buddies started lamenting that "no babieeees omg!!!" after they heard that i might lose ONE ovary. So, you imagine that they know the female reproductive system as i know piloting a Boeing 787. Also he started explaining to me that ONLY women who haven't given birth have endometriosis. He's working in a factory, supervising machines. Need i say more? None of these people who gave me their medical opinions are doctors but they act like they have PhD's in gynecology.

Quote
starlady
I went through the same thing.. with the 'Oh you won't be able to have baybeeees' and my MIL trying to tell me to have one just to cure the endo. Where do they get this crap?

Pronatalism. I mean, you do know that baybees cure everything right? From broken relationships to depression and even endometriosis.

Well, the title of this thread pretty much sums up a lot of doctors' ideas: they are more than happy to assist you WHEN you want to get pregnant, but don't bother them otherwise. (I say this as someone who suffered with endometriosis for 35+ years.)

As far as the unsolicited comments I would recommend not telling them at all. Why do neighbors and in-laws know about your medical conditions? Ignorant people making infuriating comments? Shut that down. If your DH is blabbing, shut that down too.

It sucks you won't be getting support from these people, but they are clueless. It's annoying to be pestered by baby-crazy assholes but you don't have to be.

Get a few stock phrases and sound like a broken record if you have to. You can say it sweetly (disarming) but stick to your guns. Sound like a broken record and just keep repeating the same thing.

----That's private.
-----I'm seeking medical advice for my issues and my doctor is aware.
-- I'm sorry I brought it up and I don't wish to speak of it further.
--This will be our last conversation regarding this issue.

Get the support you need on-line.

Since you posted on this page and opened it up, here are my (possibly unsolicited) recommendations from someone who has been there:

1. It's good that your doctor is sympathetic and willing give to you medical treatment. That's a huge positive
2. I know you are afraid of surgery, but part of being treated is following medical recommendations. That means documenting how this is affecting your life, keeping track of painful bloody periods, etc.
3. Look on the positive side....if you follow recommendations and still have pain, etc, you could get it removed. Why keep a useless (to you) organ? Fear not the hysterectomy, and it's indicated in some cases. It improved my quality of life IMMENSELY. I had my ovaries removed too. (kept making cysts and bad family history.) It's caused other issues, but I'm not sorry. (I take bio-identical HRT. It's getting better. )

Also, there is no blood test that can rule out cancer. CA-125 is SUGGESTIVE of cancer, but it's not definitive. There are false positives, but false negatives too. My mother had a very aggressive form of uterine cancer,and her CA-125 was never elevated.

The only way to rule out cancer is via laproscopy and tissue sampling. I would also recommend a D&C if the endometriosis is causing you to bleed a lot. Scraping out the uterine lining can help with bleeding, at least for a while and until it builds up again.

If I had pain and cysts, I would want medical follow up to rule out cancer. If you lose one ovary you still have the other one. It's always best to keep organs, but let's be logical: if they are wrecking your life or if keeping them could kill you (ovarian cancer and uterine cancer are no joke), get rid of them. That was my philosophy at least.

And surgery sucks, but if you get a good doctor and good drugs, and supportive after care, it's just blip in your life, unlike having an unhappy uterus that's complaining every month.

That's why it bothered me the surgery proposal which came really fast because they do that usually so you can get pregnant as soon as possible. Otherwise they might wait a bit and try smth. else. I told you the first doctor refused to prescribe the pill saying it wouldn't help. It was a private doctor, i paid lots of money for that appointment and i felt like my opinion didn't even count. I chose a private gyn because in our public healthcare i would have to wait for 4 months to see a doctor.(!!!!)

And even if i would have surgery, i am scheduled in 2 months (public hospital) so i do have to wait anyways, why not try with the pill and see how it goes? My periods are not bad at all, actually they are very normal which was really weird to the doctors.

Besides, my family members discouraged me from surgery saying that i'm exaggerating my pain and making too much fuss and an endometrial cyst will grow back anyways. That damn cyst is already 6.5 cm (2.55 inches) big and it does hurt, it's not any fuss.

These people are jackasses. Of course they hurt. Having one rupture is extremely painful.

Suppressing ovarian function via the Pill can help. There is also something else you can take called Lupron Depot. I had one six month course of that. The FDA only allows you to be on it for two six-month periods because it's bad for your bones.

It's a monthly shot that suppresses all ovarian function--i.e. puts you in menopause. It's also routinely prescribed prior to IVF because it's usually part of the protocol to to suppress ovarian function, then hyper-stimulate the ovaries to harvest eggs.

The internet is full of horror stories about Lupron, mostly on hysterical WannaBreed forums. (Which makes me wonder if there is a psychosomatic component, but I digress.) I had a very positive experience with it. I had a little vaginal dryness but I was energetic and I experienced pain relief and of course I didn't miss my period at all. (The doctor who prescribed it, however did not want to take out my uterus because You Know Why.)

It was a good trial run for my total hysterectomy. Unfortunately a very small percentage of women have total hysterectomies and they STILL don't get relief, which would be a nightmare. Fortunately I wasn't in that category.

I could practically write a book on my endo journey. Get the surgery, I absolutely hate being put under, hell, because I'm a total medical geek, I wanted to watch my hysty and right bitch of an ovary removal. Doctor said no though. I didn't really get a lot of relief from having laps, but my hysty? No more periods and absolutely no chance of getting knocked up! They did an abdominal hysterectomy, so I say that I delivered my uterus and right ovary via c-section. I don't understand why anyone would chose having a c-section or pregnancy for that matter. I got HUGE cysts on my right ovary, I'd get them on my left, but they weren't painful, in fact, when my doctor got in there, he had found my right ovary had started to twist, which could've led to an ovarian torsion, which can be fatal.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
What is a home without children? Quiet. ~Henny Youngman

I don't want people who want to dance, I want people who have to dance. ~George Balanchine

"I took the batteries out of my biological clock and put them in my vibrator"

In my case hysterectomy is out of the question because of my age (i'm 31). I know that from a friend who is a doctor and usually this surgery is avoided on women under 40. Have been doing some research and lots of women are let to suffer because they might have kids, doesn't matter the fact that endo ruins your life.

I hope it won't be my case and as it looks now it seems the cyst can just be cut off. Anyway, i'll see how things are going in two months. Hope the pill will provide at least pain relief. I wouldn't even have gone to the doctor if it weren't for the pain. Can you imagine that the thing has been growing there for a while and i had no idea! Scary shit.

Of course, if i were to choose between quality of life and reproductive organs, i would definitely choose quality. You can live without an ovary or uterus for that matter.

Sometimes it's just so funny because i was so angry on the fact that i can't get sterilized and look at me now...i guess be careful what you wish for. Though i wish it weren't this way.