Going to the Gynecologist w/Endometriosis

Every female has to go to the gyno at some point in their life. It is recommended that you go once a year. When you have endo it is torture to have a normal yearly exam, or at least it is for me. I dread going for several reasons. 

Pap smear: it feels like the Dr is cutting a portion of my uterus out, without medication for pain. If you could imagine going in for surgery and not being put to sleep as they cut you open, that is the way I would describe how it feels. I also have severe cramping while it is being done. I told a female PA, one time, that it hurt extremely bad and she told me to take 2 Ibuprofen before hand. Needless to say that doesn't work. I also feel the spot where they take the "sample" from for days after the fact. When you prick your finger with a needle or a safety pin, you can feel it, especially when you hit it, until it heals. It works the same for me, just on the inside, where it is constantly being "touched" by its surroundings. 

Usually, when I go to the doc, they suspect that I have cysts on my ovaries. I do, because endo is on my ovaries and causes cysts to form, though reg gynos don't know or care to treat that. Anyway, to get back on track. They always make me go for a vaginal sonogram to diagnose the ovarian cysts. Those are unpleasantly painful. They have come a long way, though not far enough. One of my first sonograms (which was not vaginal) I was made to drink 64 oz of water and could not go to the bathroom. I had to hold it because filling the bladder made the uterus and ovaries more visible. That was FUN! Not only did I have to deal with the pain of having someone push on the part of my abdomen that was filled with cysts, I had to deal with the pain of having a full bladder pushing on the same area. It took everything I had not to pee all over the place. Who knew that pushing on a full bladder would be painful and would make the urge to pee so much stronger? 

A vaginal sonogram entails a technician taking a cylindrical shaped object and pushing it inside you and moving it around to push on different spots to get the best picture of your uterus and ovaries. Sex can be painful, so who would think that sticking this object inside a woman, with endo, and pressing against different areas inside the vaginal cavity would be unpleasant? It is hard to lay there and control your movement when every movement the technician makes is excruciating. I cry through every one that I have had, with the exception of the last one. The last one was done by a technician that deals only with women that have endo. It still hurt but was by far a piece of cake compared to all the other ones I have had. That is just One of the many reasons I sing the praises of Dr Dulemba and his staff. 

Each Gynecologist asks if there are any issues that you would like for them to address. Oh here we go. I bring up that I am in pain, and not the kind of pain that Ibuprofen, Aleve, Aspirin, or Midol can touch. I get that look that you get from your mom when you have done something to disappoint her. Then I hear these wonderful words, "I know that some women have a little more pain associated with their periods, but you are no different than any other woman that is having menstrual cramps with her period." Dismissal, check. Next I tell them that I would like to get pregnant and have had a miscarriage at 7wks and have had no success with getting pregnant again. I tell them about my diagnosis of endo in 2004 and show them the post op report that proves I am telling the truth. I then say that I would like to find out if it is even possible for me to get pregnant. If I am not going to be able to get pregnant or carry to full term, then I need to know so that I can make a choice from there. Here it comes.... 

"Well, you have several options. We can put you on something like the Depo shot and give your productive system a rest before you try for a baby." (So get on birth control, which helps feed the endometriosis, in order to get pregnant later. Yeah, that makes sense). Offering of band aid, check. 

"We can give you Lupron shots which will put you in a menopausal state and will treat and shrink the endometriosis." (First of all, the last part of that statement is completely FALSE). Completely wrong info given, check. They fail to mention that Lupron was initially created to treat men with prostate cancer. Apparently my uterus and ovaries are comparable to a man's prostate. They also fail to mention the side effects that are likely and/or possible, that they are trying to get it taken off the market, and their success to failure rate with this 'treatment'. (Disclaimer: I choose not to take Lupron, but it has been effective for some women. It is just my personal choice not to take this med because of other issues that I have that can be made worse by taking it). 

"The last option is to have a hysterectomy." Can I just say that a hysterectomy does nothing to solve or cure the endometriosis and the pain associated with it. If you don't get the endometriosis excised (completely removed) you will end up no better off than you were with all of your organs. The other part of that last 'treatment' is, how does that address my concerns in any way? How does that answer any of the questions that I have? I see it as a quick way to get me out of the way and attempt to shut me up. It pisses me off every time I go to a gynecologist. Attempt to get rid of me, check. 

If you want truly good treatment, find a true SPECIALIST of Endometriosis. Do not get on google and find a doctor that their profile 'says' they treat endo. Call your insurance, or get online and do a physician locator search, with these specific words: Endometriosis Specialist. When you have names that appear, go to their website and see if it is centered around endometriosis. Meaning, does it tell you what it is? Does it explain treatments? Does it tell you how to diagnose? Is everything on their site endo related? Does it tell you that excision is your best hope of relief? Does it tell you that there is no cure for endo? If the answer is no, keep looking. Go to the CEC (Center for Endometriosis Care) website and find a specialist. Get on Facebook and find a support group (that is where I was pointed toward Dr Dulemba). Do whatever you have to do to get actual treatment and not feel like you are insane. Regular Gynecologist just don't know enough about this disorder. In the long run they end up putting you through more pain, stress, and mental anguish. Whether it be due to their lack of education, their lack of desire to learn, or they just don't give a darn about you and your complaints, they just aren't equipped to help you. 

Find someone to help. Don't wait, like I did, for the hopes that you will be able to convince some doctor someday that you aren't lying and you are worth the extra effort. Don't go through needless painful tests over and over. Don't go 20 years, like me, and end up in severe pain, with recurring adhesions, and possible infertility. 

If you are hurting during your period, having to stop your life when you have your period, and/or having painful intercourse, go see a specialist. If you are experiencing any of the things that I have posted, go see a specialist. Trust me, it is better to hear that you don't have endo, or any other period related disorder, from someone that actually knows, than to go 20 years crying and asking why you can't get help. 

My Story

 I transferred this post from my crochet blog. I wanted to make sure that all of my endometriosis posts were together.

The Million March for Endometriois is a cause that is very near and dear to me. I am a longtime sufferer of endometriosis and recently diagnosed with adenomyosis. The march has been set up to bring more awareness to this illness and the debilitating pain and infertility that it can cause. There are not enough physicians that truly understand this problem. There are many women that have a similar story to mine and it is not the way that women should be made to live.(Story will be below. Please note that the story is graphic, with not so pleasant information in it.)

I am making Endometriosis Awareness Ribbon Scarves to show my support for the cause. The scarves are the official attire for the march! I have spoken with a coordinator of the event and we are going to paint Washington DC YELLOW ! There are many objectives for this march, all of which NEED to be accomplished.

 Picture 1 is acrylic. Picture 2 is the light weight 100% Cotton. Picture 3 is a thicker warmer 100% Cotton.

Endometriosis is an illness that causes endometrial cells to grow outside of the uterus, which it is still unknown why. When those cells grow, they attach to other organs in the body. When it is that time of the month, all the cells react as though they are inside of the uterus, and can cause significant pain and complications with normal bodily functions.

My Story:
I became a "woman" when I was 13 years of age. From the very start, I had severe pain associated with my monthly. I missed 2-3 days of school every month. I was lucky to have a doctor that understood that I was not making up the pain and he wrote me a note for school, so that I did not get into trouble for missing so much school. My school was very understanding and did not reprimand me for missing school. It wasn't like I was enjoying myself, or running around having a good time. I was in the bathroom, laying on the floor, writhing and crying out in pain. I chose to stay in the bathroom because I would go through bouts of diarrhea and vomiting, along with extremely heavy bleeding. It was a wonderful thing to go through when I was supposed to be a child/teenager.
I ended up going to the hospital about 7 times in one year when I was 15-16. At that time I lived somewhere else and had doctor after doctor tell me that they did not know what was wrong with me. I was essentially hemorrhaging for 2 weeks at a time and would get a break for 2 whole days and then it would start again. I came back to the doctor that I had that was understanding and he told me that he suspected Endometriosis and put me on the DepoProvera shot, after trying many other Birth Control Pills to help with the symptoms that I suffered from. He said that it would help to maintain the illness and keep it from growing. (WRONG)
Fast forward to 2004, The pain had gotten so bad and the Depo Shots were no longer effective. The shots were supposed to be given every ninety days, and I was having to get them every sixty and I was still having a monthly, which hadn't happened for the many years I had taken it. I found a really good female Doctor at Baylor in Dallas. She was kind and explained things in a familiar and funny way. For instance, I had multiple cysts on my ovaries and she explained to me what my ovary SHOULD look like on the sonogram and what it DID look like. "You ovary is supposed to look like a chocolate chip cookie, with more cookie than chip. You have WAAAAAY more chip that you do cookie." LOL That made sense to me and it made me laugh, which is a hard thing to do when you are in so much pain. She ended up doing a lap surgery and found that I was a Stage 4 Endo sufferer. She said that they found it on every organ in my abdomen. As good as the doctor was, she did not have the knowledge to remove the endometriosis completely, and therefore made it worse for me in the long run.
After that surgery, I had no funds to keep going to the doctor, as now I had a pre existing condition. I was unable to acquire ins that would cover my treatment, so I lived in agony until 2013. By this time, I had had a miscarriage (April 2007), and had not been to the doctor since 2004, so no pre existing. My husband and I had been trying to get pregnant since our miscarriage, with no success. The pain and complications had gotten so severe that I was ready to shoot myself. Dying would be so much easier than going through the pain up to 2 times a month. Mind you, the pain is not only when I have my monthly visitor. It lasted for weeks. It messed up my bowels and caused pain with marital "fun", which wasn't so fun. I would sit in the living room and cry, and run to the bathroom and cry, puke, and be on the toilet. Imagine you are on the toilet with diarrhea and you have a waste basket in front of you because you are vomiting too. Sounds fun right? Well, add being in the worst pain that you can imagine. After I would get off of my monthly, I would get extremely constipated and then out of nowhere would have to run to bathroom with diarrhea (another wonderful side affect of Endo)
I was able to get on my husband's medical ins through his job at the beginning of this year. We had finally paid off some of our large bills and were able to afford the premiums. I did a Google search for a gyno that specialized in treating endometriosis. It brought up several names, but only one woman. (I prefer women because I was unfortunately raped as a child, and feel uncomfortable with men doctors) I made an appointment and went to see her. I described my situation and all of the complications that I was having. I even told her that I was to the point of wanting to die because the pain was so unbearable. She looked at me and told me that I was "normal", having cramps like most women, and sent me home with a years worth of Aleve. Yeah, ALEVE. I walked out of her office furious. My husband was even more upset than me. He knew that what I was going through was not "normal". He has a mother and 2 sisters, and he had never seen anyone in agony the way that I was. I joined a support group on Facebook, because I knew that I was NOT NORMAL, and was referred to Dr Dulemba. He is a real Specialist that treats only women who have Endo and the complications that results from having endo. I made an appointment with him and saw him at the end of March. His sonographer did a sonogram and found a endometrial mass on one of my ovarian tubes and saw that my ovaries were not moving, meaning they were adhered to something else in my abdomen. We set  up surgery for April 3rd and he found that I was far from normal. On the post op report it is said that my anatomy was unidentifiable due to every organ in my abdomen was adhered together and they couldn't tell one organ from another. Dr Dulemba was given permission to take pictures to use as a teaching tool. He said that when he got in there, it was so much worse than he had originally thought, that he did not have time to take pictures. He was more focused on getting me ":fixed" than anything. He also told me that there is a point system that they use to determine what stage of endometriosis you have. You reach a Stage 4 at 40 points and he quit counting at 72. He found that I have Adenomyosis, which happens when the endometriosis penetrates the uterine muscle. The only way to treat the adeno is to have a hysterectomy. There is no cure for the endometriosis. Dr Dulemba excised the endo, which is the best treatment available for this illness right now. He disconnected all of my organs and patched me back up. He attempted to keep the adhesions from coming back, but he suspects that some of them have returned.
Needless to say, I am now at a point where I am going to have to fight with the insurance company, United Health Care, because the hospital that my In Network doctor uses, is Out Of Network. The hospital bill is over $177,000 and UHC is only willing to pay a little over $34,000. So now, I not only fight my body and the pain, I have to fight the insurance company. I HAD to have this surgery. It wasn't something that was an elective surgery. I need another surgery because I am having major issues with pain and trouble with severe constipation. I am not able to have the surgery because I owe the hospital over $140,000 and the ins has informed me that I am close to my yearly max, though they aren't paying that out.
I am considering a hysterectomy because I have no quality of life. I am not able to do normal, everyday things. I can't do dishes, wash laundry, vacuum, or play with my dogs. I can't have a marital relationship with my husband, so can't get pregnant, even if it were possible.

No one should have to deal with this.This is torture. I am being punished for being ill, for getting the necessary treatment, and for wanting to be a productive member of society. I would love to be able to go to the lake with friends and family, to Six Flags or Hurricane Harbor, or even go outside and help with yard work. I spend my days inside my house, hiding from the world. How is it fair? I know that life isn't fair, but this is beyond unfair. There is no reason that women should have to live in fear and agony. My hope is that this march will bring more awareness and many more changes to the medical community and how they treat us. We are passed over and pushed aside as though we don't matter. Some of us are no better than some cancer patients. No we won't die from Endometriosis, but we can die from some of the complications. Some of us, like me, suffer from severe pain. More women suffer from endo than are suffering from Breast Cancer (my grandmother is a survivor, so I am not trying to take anything away from it's importance), yet little attention and/or knowledge is focused on this illness. I think it is time there is and there are atleast a million other women that agree with me.

If you are interested in going to this event, please visit http://www.millionwomanmarch2014.org/ to see how you can participate. If you are planning on going, please visit my website and buy a scarf to wear to the event. A portion of the proceeds will be donated to help. Barbara Page is getting all of the information available to make this scarf the Official Attire for the March for Endo 2014!

Thank you for reading and I hope that you walk away with a little more knowledge about Endometriosis. If you know a young lady/woman that is suffering from painful periods, please don't think it is "normal". Pain is your body's way of telling you that there is a problem. Don't ignore it.

Some Complications of My Endometriosis

Recently I posted to my crochet blog about my story and it was suggested that I start blogging about my endo experience. I was posting to my crochet blog because I am participating in the Million Women March for Endometriosis 2014 by making support ribbon scarves for everyone to wear during the march in Washington DC. Unfortunately I will be unable to attend because my illness keeps me from venturing far from home. I will be there in spirit and will be hanging around the necks of those that are able to attend. I think that is a big enough presence for me.

So, now for the reason for this post. Endometriosis doesn't just affect women during that time of the month. It messes with so many other bodily functions throughout the entire month. It can affect sleep patterns, mood, and cause bowel issues, just to name a few. I live with all three of the above. 

My sleep patterns are so wonky that I never know if I am going to be able to sleep or if I can stay awake. Am I going to be able to sleep for more than an hour at a time? Am I going to sleep for 10 hours and still feel like I haven't slept enough? Most of the time I am awake until 3 or 4 am. My stomach tends to think that night time is the best time to be a bother. 

My bowel issue is constipation. I have adhesions that adhere my uterus to my rectum and my ovaries to my sigmoid and cecum. When I have bowel moving through my intestines, it is hard and feels jagged, and feels like it is scraping against my uterus, ovaries, and the back of my vaginal wall. (If you can imagine something scraping its way through your intestines and hitting your organs on its way through, you can just imagine how much it can hurt.)  I have spoken with my endo specialist, Dr Dulemba, and he is almost positive that some of my adhesions have returned. It is extremely hard for me to get the bowel out. Since my intestines are being pulled in directions they aren't meant to go, you can understand why it would be hard to squeeze it out. The pain and pressure tends to keep me in a bind (punt intended) most of the time. The cramping can be unbearable. I feel diarrhea cramps and feel like I really need to rush to the bathroom, only to sit on the toilet and cry because I am unable to go and it hurts to try. 

Dealing with the mood swings. I have been diagnosed with severe anxiety. I couldn't possibly figure out why I would have severe anxiety (sarcasm, of course). It isn't like I have lived with severe pain, been dismissed by tons of doctors, or had to live with the fact that I can't live my life. 

I have survived a lot in my life. That is the thing that probably pisses me off the most. I was an abused child, physically, mentally, emotionally and sexually. Childhood was something I watched everyone else have. Now I watch as everyone else has a life as an adult. Pain has always been a factor in my life and I thought that once I grew up I could escape the pain that I had to endure as a child. Endometriosis took that dream from me. It tends to make you angry, sad, hopeless, and makes you feel guilty. 

I am lucky to have an understanding husband. He is beyond supportive. For over 7 years he has watched as this illness has taken more and more of our life from us. He goes to work everyday of the week and then comes home and does all the work around the house. That makes me feel so guilty. I should take care of him because that is my job. He does his job by providing for us and it is my job to take care of him and our home. I do good to get dinner ready by the time he gets off work, and there are more and more days that I am not able to even do that. I want to be able to clean the house, do the laundry, and give him a break when he gets home. I want to be able to relax with him and show him ;) how much I appreciate all that he does for me. Endometriosis takes that ability away from me each and every day. It takes its toll on how I value myself. He tells me constantly that it is beyond my control, and logically I know he is right. Emotionally I feel as though I am a burden. I cost so much money, and occupy so much of his time (not in a good way). He holds my hand and tells me that he knew what he was getting into when he got together with me and he wouldn't change his decision. I must say, he did know, because I told him exactly what he was getting. I didn't want either of us to get too invested if it was something that he didn't see coming and couldn't handle. 

It is just hard to sit and watch life as it passes you by. You watch everyone go to concerts, amusement parks, camping, or to the lake, and all you can do is wish you could join them. Your friends have children and go to school plays or ball games and post, on social networks, how excited they are to watch their accomplishments. You just watch and wish that you could feel the way they feel. 

I know I am long winded and can tend to be all over the place, but I believe that it is important to share all of this. There are others that experience these feelings of discontent with the hand that endo has dealt them. I know I am not alone. I hear the stories and sympathize completely. I write all of these thoughts and experiences in the hopes that I can let that one person, that feels like no one understands, know that she is not alone. She isn't crazy or lazy. She is important and matters. I found a blog that helped me and I think that it is only right for me to pay it forward. 

It is my hope that you walk away with a little more understanding and sympathy for the people that cross your path that suffer from an invisible and/or incurable illness. It is also my hope that if you suffer from endometriosis, you found a place to find the understanding and sympathy that you can't always get elsewhere in your life.