Beginning to wonder if I truly am insane

Hello. I'm sorry, but this is going to be long. I'm writing this on the worst day of my life, and, though I'm not usually one for seeking support, I need all the help I can get right now to keep from going over the edge.

Today was the last step in a long and agonizing journey. I began having crippling period pain ten years ago, when I first started menstruating. It got worse and worse, and eventually moved beyond just the periods and into the realm of chronic pelvic pain. Among other things. From the moment I heard the word "endometriosis" I knew that was me. Reading stories of women who suffered with it only further strengthened my belief that I was one of them.

It took two years to prove I was right. A relatively short time, compared to the appalling average of a decade or more. But through multiple emergency room visits, dealing with arrogant, heartless doctors, and a rather frightening brush with the possibility of ovarian cancer, I finally got there.

I had a laparoscopy in April 2013. A gynecologist I was referred to by the emergency room performed it - mostly to biopsy and remove an ovarian mass, which thankfully turned out to be benign. He also performed a D&C and poked around for any other abnormalities that might explain my unusual pelvic symptoms. Not that he was particularly concerned with them; he brushed them off like everyone else, and I truly believe the only reason he operated was to avoid getting sued if it later turned out I had cancer that could have been stopped before it got too serious.

But the important thing was that, after two years of people telling me I was crazy (or depressed, or manifesting my pain because of social anxiety), I finally had IRREFUTABLE PROOF that there was a cause for all my agony.

Or at least some of it. Two months after my surgery, my periods were worse than ever. But also different. The sharp, stabbing, constant pain was mostly replaced by a pain that I can only describe as someone sticking a thin sack into my uterus and filling it to bursting with red hot coals. It's agonizing beyond belief. It is completely debilitating. I'm lucky to be able to stay conscious, much less functional. In addition, the blood loss is also severe (same as it was before surgery). It waterfalls right out of me in clumps. I don't even bother with tampons anymore because I soak right through them. I use thick pads, but even those don't last more than two hours or so. I have actually gone into shock from my period. Am I the only one who thinks that should not happen?!

During the month, I often get bloated, sore, and I can tell that my uterus is swollen. It interferes with being able to go to the bathroom. Sometimes my bowels will be blocked up for days, which just compounds the problem. And I know, same as I did with the endo, that it is adenomyosis. I even have ultrasounds (from before the surgery, which means it is likely worse now) showing an enlarged uterus.

I am now completely housebound due to chronic fatigue. My heart rate skyrockets from walking a few feet. My vision goes black when I stand up. I can't do anything. I can't even thinkabout doing anything. My quality of life is non-existent. At 21 years old, my entire future has been stolen from me.

I need a hysterectomy. I made my peace with that reality long ago. My desire (or lack thereof) to have offspring is irrelevant. The organ is diseased. It is killing me. Slowly, torturously, one tiny little bit at a time. And it needs to go.

So I said this would be long, and again I'm sorry, but now we're at the point about this being the worst day of my life. When conservative surgery failed (made things 50x worse, actually), I decided it was time to see an endo specialist. After waiting four very long and painful months for an appointment, I saw him today. I'm not an optimist. I did not have high hopes for this visit. But it was worse than I could ever have imagined.

I knew I'd made a mistake when one of the first things he did was make a disapproving remark about my (barely existent, not that it matters) sexual history, because he doesn't belief in sex before marriage. He went through and asked me questions, barely acknowledging my answers. I'd already filled out all this information for him, and somehow the hospital never gave him my records (and I know they were sent, because I confirmed it with the other GYN's office). So I was already at a disadvantage in trying to make my case (god why does it sound like I'm a criminal trying to prove my innocence?). The one thing I did have was my not-so-irrefutable proof. I had the pictures from the surgery, which were labelled and documented that I had endo.

He actually had the gall to say that he wouldn't believe I really had it unless he did another surgery to check for himself. What?! I should have walked out right there. It may at least have saved my mental state, which is now in a delicate balance of chaos and the deepest, most dehumanizing misery I have ever felt. The entire time, he treated me like nothing. I wasn't a patient, I was a number in a study. I wasn't a person, I was a specimen. I would have to repeat things over and over and he still completely forgot them until I was prompted to say them again. And I could never convince him that I was suffering. I won't even talk about how he reacted when I mentioned adeno, much less hysterectomy. Yet another doctor who thinks I belong in the nuthouse. Are they really wrong?

This was my last resort, and I totally blew it. I feel so lost and alone and I have no idea what to do. And I also have no one else to ask for help. If anyone has any advice or suggestions (or anything really) I can't even say how much I would appreciate it. Thank you for reading.

Wow!! My dear, take a deep breath!! I am not a doctor... But I truly believe that we know our bodies. Call it God given intuition. I had horrible periods since I was 10. No one ever told me that it was abnormal... 33 years of horrible periods, and a hystorectomy later... I am wiser... So here is my advised.. I think that it would be wise if you find a Gyn/surgeon that is well recommended. Perhaps someone in this forum lives around you and can recommend someone. Now, remember that it is quite common for gyns not to quickly do a hysto bc of your age. Gyns don't want to take Away your child bearing years. Then, you are going to have to deal with any MD to go through the whole procedures all over again. It is going to be the 2week waiting game. First the initial check up, then the appointment for the ultrasound, the biopsy, etc, etc, etc. make sure you tell your New Md how really bad your periods are, put a lot of emphasis on how you are so sick and not functional during your cycle. Women carry the "super" women cape... And tend to say we are "fine" when we are really braking apart. So.. Long story short... Take a deep breath, keep asking questions.. Women in this forum are an amazing support group!! If not, we would all be diagnose "nut" cases... 😉

Your post ripped my heart out. I get it - the absolute depths of despair having chronic pelvic pain can take you to. I really do not have much to offer other than I do not think you are crazy. Or if you are, chronic pain has a way of doing that to a person. I know there have been times I have been so at my wits end that I felt like I was going to lose it, too. The blatant disregard of the pain from doctors is maddening.

Sorry you feel so bad right now. I wish there is something I could say to make it better. If I had any advice it would be to don't give up. Look for another doctor. When you say you "blew it", is it because you live in a small town and there is no one else who can help? If so, are there any larger cities close by where you can seek help?

Miles, thank you for the advice. I have already been through nearly half a dozen doctors in the past two years, trying to find one who will even admit that there is a problem. This guy I saw was supposedly a specialist, which I thought would be the best option. Turns out it was the worst possible thing I could have done, and that's just soul crushing. I know my age is a problem, but if it needs to be done it needs to be done no matter how old I am. I am an adult and no doctor knows me better than I do. But unfortunately they all think that, on every issue. Obviously they even know better than me whether I'm in pain.

Ivy, I live right near a fairly large city with a large medical base. I go over there anyway (the doctors and hospitals in these small towns on the outskirts are awful). It's still a "medically underprivileged" area though, and not many doctors accept new patients. It's been hard enough to find the ones I have, and none of them have helped me at all. I can't even find a GP, though I know I need one and I have been looking. If I could, I would travel out of the area, but (I hate to admit this) I'm so weak most of the time that I can barely walk to my car.

Sorry for the late replies... I posted this right before bed. Thanks for the encouragement.

One other thing I can think of is just ask random unrelated people if they know of anyone who may be able to help you. Totally unrelated example: I am new to my city and I do not have a network of friends or family, or doctors, mechanics, plumbers, etc - you get the idea. I really don't know anyone here. I took my dog to the vet down the street. She was great (luckily) and I started to trust her... when I needed a dentist, I asked my vet who she uses which led me to a great dentist. I noticed that the dentist had fair skin like me, and living in the Valley of the Sun does some scary things to your skin and those of us who are fair need a good dermatologist. I asked if she knew any dermatologists, and she recommended a great dermatologist. I suppose my point is that just asking people can sometimes lead to great doctors. Maybe you have tried that, but if not, it might be worth a try.

Kind of a related example: I actually found a good GYN referred by my sister (the only person I know who lives here). My sister had Vulvodynia which is another condition that causes chronic pain. She had this condition for 15+ years. She traveled the country trying to get help. She traveled to NYC and MN to the Mayo clinic to see several "Vulvadynia specialists" none of which helped her. Her chronic pain made her crazy, literally. So, she went to a psychologist who specialized in women with gynecologic problems. The psychologist referred to her a local GYN to who also "specializes" in Vulvodynia. So, my sister went to this doctor without much hope that he would be able to help. He was just a regular GYN - meaning if you Google Vuladynia, you will not find his name anywhere. Well, he actually did cure her. He did a surgery on her that completely healed her, and she is living pain free now. And his success rate in curing Vulvadynia is 98% which is way higher than the other vulvadynia specialist found when you Google the subject. She trusts him and referred him to me. Now, I have fibroids which he does not appear to be interested in as he has passed me off to another doctor. He is a great doctor for my sister, but probably not for me and I am going to keep looking.

I am not trying to hijack your thread with mine and my sisters stories (sorry about that). Im just trying to illustrate the various ways help can be found.

Oh don't worry about hijacking the thread. Sharing stories and advice is what the forum is for, right? I'm glad to hear your sister got the help she needed. If only all of us could be so lucky.

I appreciate the advice. I really wouldn't even know who to ask to start a chain like that. I don't know many people in the area I live either (at least not who are still around here), and at my age it's not like I have a bunch of friends with medical concerns to talk about this stuff with. My only relative (female or otherwise) is my mother, and she gets all of her healthcare through the government, so she wouldn't know anyone I could go to.

I will keep it in mind though, if I ever get the chance to ask. Might come down to asking the cashier at the convenience store, but it's worth a shot at this point. I still can't believe these people who call themselves "specialists." Guess I learned the hard way that studying something doesn't mean they're any good at actually putting it to practice. After yesterday, I wanna say I know how a lab rat feels.

I'm so sorry you are having to go through all of this at such a young age,but know you are not alone.You will find stories all over this site of women bring told it is all in your head.Myself included.Let me just say it sucks.It is hard to live through all these symptoms and due to Drs advice after a while it seems friends,family and coworkers make you feel that way too.That is what makes this site so great.It is comforting to speak with women who are or have gone through similiar situations.
I'm not as young as yourself but I had my LSH at 31 and that was not my first female related surgery.I had a great supportive Dr,but he believed that an ablasion was a cure all.After the ablasion,yes the bleeding stopped,but like yourself it felt like I had hot coals sitting and my womb and was in labor for 6wks until I found a Dr. that would at least somewhat listen to me.You can't give up hun.You deserve a life,and from the way it sounds you don't have much of one at this point.My Dr could look at my ultrasound and suspect adeno.I don't remember exactly what he said but some kind of patches or spots should in the muscle on ultrasound.I even asked my previous Dr about Adenomyosis and he said no symptoms DoD not fit,but when I googled my symptoms that's what pooped up and I had everyone.I had to drive an hr away(I live in a small town) to find a Dr more expierenced to know what was wrong.Maybe look further away and ask the receptionist if this is something that this Dr deals with often.Also as mentioned before you need to make sure you tell them evertything.You can call these offices or past hospitals and request your records.They are yours and they have to give them to you.Make sure you give them about 2 wks to gather though because some places have policys about the amount of time they are allowed to get together for you.I have my own patient chart that I carry with me.That way I have my proof with me.The Dr you seen last just seems like an ***,did you have the path that showed endo? Finally,I would right it out.I typed up my entire story.Listed all previous surgeries-with relief or lack thier of following procedure.What it made worse and how etc..Also listed all symptoms seperated into body symptoms..bladder,bowel etc..What made them better worse.What I had tried without relief.
I don't know if any of this will help,but know we are here for you.If you have any other questions feel free to ask.I did forget to mention.My path did confirm Adenomyosis.As mentioned before,you know your body.I know its frustrating but you are your own advocate and if you keep looking there are good Drs out there.If you go to my thread I have my story on there.Maybe it will make you feel a little less crazy

Like an idiot I trusted the hospital he works for to give him my records. They were faxed over from the doctor who did my laparoscopy (I confirmed this with their office twice). I was relying on that to show a timeline and what the surgeon had written (the whole record should also have multiple ultrasounds, the most recent of which I know showed an enlarged uterus). I am going to request a copy from them to keep with me, since obviously the medical industry is only good at sharing information when it benefits them (I've had insurance fraud committed in my name by this hosital).

It's just so frustrating. I have read lots of stories and definitely expected to have to fight for any forward progress, but to have him throw me backward so many steps was just unbelievable. It took two years to get to this point. I'm not taking another two to do it all over again just to satisfy his ego. He almost seemed insulted that I actually knew something about endo, and didn't just let him lecture me and take him at his word. Not only have I done extensive research on these things, but I have a background in physiology (it was what I was studying before I had to drop out of school) so I understand the medical aspects.

I'll just have to resume the search and hope I get better luck with someone else. I found a doctor listed on this site's directory who actually works at an office I've been to before, so it may be relatively easy to get an appointment with him. I should have made an appointment with another doctor months ago as a backup. I had a feeling this "specialist" would be a waste of time and my instincts were dead on. I hate that I'm realizing all the things I should have done now that it's too late. Live and learn I suppose :/

There are a lot of doctors that are just jerks. Fortunately, there are a few good ones. It took 13 years for me to get a lupus diagnosis even though I had many symptoms. The docs made me feel like I was crazy, too. I found the worst doctors were from university hospitals.

You're not crazy. The doctor is.

Do not think you are crazy or give up. I have the same story, as I'm sure many other ladies have. My body has hated being a "girl" as long as I can remember. I missed several days of school every month because of cramping and bleeding. After begging several doctors when I was 19, I had my first diagnostic laproscopy. Twisted ovary, endo, cystic rupture had blown apart the ovary that wasn't twisted. So began the next few years of trying EVERYTHING...birth control, lupron, second surgery. Then my doctor asked me to go to Florida to golf with him. Thus, I found a new doctor. I spent the next 10 years trying to get something done. Most doctor's will NOT go to removal of parts unless it's last resort. Now, after 20 years I finally have a doctor (female) that said "you've been going through this long enough, let me know when you are ready". Now, it's just getting mentally ready. I've been in horrible pain for years, but it's still a hard decision.

Keep making those appointments, keep pushing your case. You know your body and better than anyone else. There are good doctor's out there, you just need to weed your way through the crappy ones to get there. Good Luck.