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.
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