Does this sound like Endo?

Hi BEli,

I can totally relate to your situation on many levels. I first want to say I am not a doctor so I can only share my experience. When I was about 21 I started noticing something wrong, especially when I became fearful of having a bowel movement because it felt like everything was going to fall out. Intercourse is painful with endo, as well. My periods became extremely painful, I call it suicide pain because at those times I would have rather been dead, it was that bad. I saw a gynecologist who told me I had something, the name eludes me, and sent me on my way. I saw another GYNO, who I love, and she told me that something I was previously diagnosed with could only be confirmed on an autopsy. So don't believe just one or two doctors, keep being your own advocate. My GYN said she thought I had endometriosis, I had never heard of it, and she could confirm it with exploratory surgery because YOU CANNOT SEE ENDO ON AN ULTRASOUND OR ANY IMAGING. So, BEli, please don't let them get you down. I am in the U.S.A., where I can see a doctor easily in one or two days so I have the ability to see 10 within a month if I wanted. I know where you are, it is more difficult to be seen quickly. I can tell you that your family doctor, PCP, will NOT be able to help. They just don't specialize in that area, they are more general and they refer you to specialists. (I've been working in the medical field for years, too). You need a GYN, gynecologist, try to get a GYN not an OBGYN, as they are often in the hospital for births. A GYN is more accessible.

Before I went through the exploratory surgery, I tried several birth control pills, the Lupron injection (puts you in a fake menopause to stop periods, is expensive and causes severe hot flashes and night sweats which are awful, and I couldn't afford more than one- it's not worth trying), and finally said yes to the surgery as a last resort. I am so glad I did it. My GYN did my surgery and she said I did, in fact, have endometriosis as she suspected and I had the most endometriomas (the lesions) on my left ovary than she had ever seen. I was put on a painkiller and a muscle relaxant combination for a year before I went back telling her I still had pain even after she removed the little suckers (they grow back, so surgery to remove them is not a cure at all and I knew that). As a last shot, she gave me a birth control pill I had never heard of, nobody really has, and told me to skip the placebo, so she writes it for one every 21 days. I have been on this pill, Reclipsen (I do use the generic Emoquette) for over three years now, skip placebo, which means NO period!! And I have been pain free and happy. The only time I use the muscle relaxant and painkiller is when I accidentally forget a pill or two and the spotting is more painful than normal.

I also want to add that I did have a cyst rupture and it is so painful that I went from having some cramps along my abdomen to vomiting within minutes. I ended up in the hospital and they told me I had a ruptured cysts. That is extremely painful, so you may have experienced that. They can't really tell, they can only see the fluid and make the connection.

BEli, don't give up. You most likely have endometriosis and it just takes the right GYNO to know it. I am so happy I kept looking for someone who may know what I was dealing with. It took me a year to find the answer. They can run every test they want on you but the only way to know is to either go through a surgery or ask about a birth control and skipping placebo pills to stop your period. No period = no pain and it is safe, if they are concerned about that they are silly and uneducated. It is also good to remember that it is YOUR body so if you want to try something, it's up to you, not them. You just have to be a good advocate for yourself and keep pushing. I was once told, by a very uneducated doctor who I don't think should have been practicing anything, that my vagina was "depressed".... that right there tells you doctors don't know everything. They often times just resort to their books and forget about their experience.

Good luck to you and keep us posted!! God bless.

-H

I will keep my reply short, as it is 2 a.m. for me, THANK YOU SO MUCH FOR YOUR REPLY. I have been sitting here tearing myself apart for the past two weeks thinking to myself "holy crap what is this." I am very disgusted with the second doctor that I saw, to accuse me of faking because my Ultrasound was clean, the technician thought I had no appendix, which I do, so clearly somebody needs more training or something. I was so frustrated with the way I was treated. Unfortunately for me, seeing a specialist here takes a lot of time, I do have a referral finally to a GYNO who specializes in Endometriosis as well as Laparoscopies. I won't be in until the middle of January, but I am hoping that it is the problem, my family doctor was only useful for the referral and putting me on stronger pills, but then he brought up the idea of Ovarian Cancer (The last thing I wanted to think about during the holidays. Thank you so much for your story, it is very comforting, that is exactly how I feel with everything, my symptoms mimic yours, bowel movements are so far okay, sometimes it makes the right side (where the pain originates from) a slight bit more painful, but it is mostly okay. But my god, my periods make me want to die, nothing makes the pain better, absolutely nothing, I had breast augmentation in August and have Oxy left, and that didn't even help. It is brutal, and my poor fiance always thinks he's going to rush my to the ER it's that noticeably bad.

I am pushing for every test until I get a diagnosis, I'm in Canada and though we pride ourselves on healthcare, it really is not all it is cracked up to be, I see many people who die from careless doctors that people who live. It sounds very morbid, but doctors here overlook things and do not care, that is why I am pushing until I get an answer. If it means I go to the US and I pay a doctor, fine by me, any dollar amount is worth keeping a life. See the fluid is what worries me, but apparently it was such a small amount it should be gone by now. But for all I know the fluid isn't there, I'm a medical student, and I know what loose fluid looks like on a CT scan, and the careless doctor (the one who thought I was faking for narcotics) he wouldn't show me the image. So I wonder if it isn't there, and he sent me home with a prescription to get me out of his hair. Which isn't fair to me, because now I sit here wondering what is wrong.

Thank you so much H! And I will definitely be keeping in touch!

Merry Christmas/Happy Holidays

I appreciate you sharing your story, and giving me some confidence into what may be going on!

-B. Eli

B,

Keep your head up and one day you will find the answer and the right doctor!! I will keep you in my prayers!! Have a wonderful New Year and may I suggest you research yoga and other holistic care you can do at home that has shown positive results for those with endo? Good luck!!

-H

Hi everyone,

I'm currently showing the same symptoms and i'm just impatiently waiting for my referal for an ultrasound on my womb. Although, as you's both know its not the best way to find it but i'm being made to do that before i get an endoscopy. But i know endo can affect other organs in the proximity. Have either of you had kidney trouble? I've had 7 kidney infections in the past 2 years and kidney pain quite regularly now. I'm being reffered for an ultrasound on them too. But it could be months til i hear back. But i keep wondering if it could be related to the endo syptoms.

Skye.