Update 112321

Hello my zebras and spoonies! thank you for coming and hanging out with me. I’m glad that you’re here.

Today I’m just going to give an update of life, the universe and everything that is me. Some backstory is that I have endometriosis and with that I’ve had a lot of pain, which has been progressively getting worse over the last five to six years. I have a Mirena IUD that I’ve been using to control the bleeding and pain. It’s not really doing the job that I need it to do anymore. It has been controlling the bleeding, but not the pain.

My OB/GYN doc was not really super excited about changing my treatment plan and frequently commented that I am almost at the age of menopause. I am forty. The average woman in America starts menopause at the age of 51 and it lasts an average of four years. That would be 15 years before menopause caused the endometriosis in my body to stop plaguing me. That would be 15 years of severe and uncontrolled pain. That doesn’t really count as almost to me and yeah, I’d like to have some pain control and not just be miserable for the next 15 years while I wait for menopause to kick in and make my endometriosis like settle down. I find it appalling that a health care provider would consider it acceptable care to ask someone to endure 15 years of severe uncontrolled pain, but that’s what happened.

I went and got a second opinion. There’s a lot of baggage that comes with that. I don’t know about any of you all, but I have had a lot of history of providers not taking me seriously and my symptoms being dismissed and being treated poorly in general in the medical field. Because of that, it’s very difficult for me to go to a new doctor without a lot of anxiety. It’s been made a lot worse over the last two years because generally speaking, I am not able to have support present with me when I go into those appointments because we’re not allowed to have other people with us for our appointments anymore. My husband normally comes to all my appointments to be emotional support through the process and that’s especially important for me when I’m meeting a new provider. I don’t think that most health care providers really appreciate the way that trauma through the health care system really affects patients and our ability to seek health care and how hard it is for us to see a new doctor and to have to go through the process of explaining our history and putting ourselves out there and hoping that we’re taken seriously and that we’re believed and that we get the care that we really so deserve.

So there’s been quite a bit of stress for me over the last month while I was waiting for this appointment, because of the anxiety that builds up as this appointment came closer. However, I can happily report that this appointment went really well. My new provider did take me seriously. We had some really good discussion about the pros and cons of different treatment options and we did settle on a new treatment plan. Just like any treatment plan, it may or may not work. We don’t know. But at least we’re trying something and that makes me hopeful that I can get some better pain control. I think the thing that’s most promising is that this particular provider listened and believed me when I said that my pain was out of control and was at a level that I really couldn’t manage any more and also talked about the steps that would come next if this treatment plan was not successful. It wasn’t just like well, this is gonna be your one option. She completely recognized that this might not work and if it doesn’t work we talked about what’s next.

Because the progesterone in the marina has been managing my symptoms pretty well historically, the thought process was that it is likely that the endometriosis outside of the uterus is what is causing me the increased pain and so we’re going to go with a oral progesterone tablet that I take every day in the hope that a systemic progesterone would be able to address the endometriosis that is not within the uterus where the IUD can’t reach. Then if that doesn’t work, the next step would to be actually doing the gold standard diagnostic procedure to be 100% sure that we are looking at endometriosis because while I do have all the symptoms of endometriosis, there’s only one way to be 100% sure of the endometriosis diagnosis and that is to do a laparoscopic procedure where they put the camera into your abdominal cavity and look for those little pieces of tissue that are not where they’re supposed to be. MRIs, ultrasounds and CT scans do not definitively diagnose endometriosis because the endometrial tissue generally speaking does not show on these diagnostic images. So even if you have imaging done, generally speaking, it’s not going to show the endometriosis with the exception if you have endometrial growths that are like really huge and take on almost a tumor quality. And I think they’re called endometriomas. If you end up with something in that category then you can kind of definitively make the diagnosis. But usually then you’re just gonna say, Well, you got a tumor, and they go in and they take it out and then they’re like, yeah, it was an endometrial tumor.

I think part of my frustration is that I have had these symptoms for the majority of my life. I really started struggling with my symptoms back when I was 15 or 16 years old. I’m 40 now. So most of my life I’ve struggled with these symptoms, and throughout all this time of being treated, I think my biggest frustration is the lack of 100% surety that this is even the right diagnosis. I might have all this time been struggling with good control and good management because we’re treating the wrong thing. So there’s that level of frustration for me, but there’s also the reality that with my Ehlers Danlos Syndrome, a lot of risk comes into play in breaking the peritoneal cavity. We have a lot of risk for herniations and prolapses. When you compromise the muscular wall of the abdomen cavity, it increases the risk of things that we are already at pretty high risk for so we try to avoid doing that with people who have Ehlers Danlos Syndrome. I mean really, we try to avoid doing it with anybody but especially for people who have Ehlers Danlos Syndrome. So on the one hand, I do understand their reluctance to do the diagnostic procedure to be sure of my diagnosis. But on the other hand, as a patient, it’s very frustrating not having the surety of that diagnosis while my symptoms continue to be poorly controlled.

We’re gonna give this hormonal treatment two months and see if it improves my symptoms and I’m hoping that it also does not make my hypermobility worse, since progesterone is correlated with making women more hypermobile; that’s part of its role, to prepare you for labor and carrying a baby so it’s supposed to make your joints more lax, so that when you give birth, those joints can move in your pelvis so that the baby can pass through without causing the mom harm and trauma. So the downside to using progesterone, in my case, is that where I have hypermobility already, there is a risk that I will start having more issues with joint stability and an increased number of subluxations. I’m hoping that this isn’t the case. I have definitely reached a point in my life that I am in the stiffening phase of Ehlers Danlos and my mobility is definitely decreasing. So it is less likely to be an issue at this stage of my illness, but it’s still a risk factor. It’s something that we just have to wait and see how it plays out. But I do feel like the risk of subluxations is less than the risks that comes with having a laparoscopic procedure.

This is the way that you have to look at things when you have chronic illnesses. There’s this constant no perfect answer. There’s no perfect, risk free way of treating things. You always have to look at what is the lesser of two evils and what is the risk factors that that you’re willing to take on? I talk about this a lot. When you have chronic illness, you don’t get to have treatment that is risk free. Even choosing not to treat comes with risk. So yeah. I just want to use this as an example of how you have to look at the pros and cons of not treating and then the pros and cons of different options for treatment. We always have to sit there and ask “what is the best option for me?” and “what risk factors am I comfortable with?”

This kind of in the stuff that I’ve been dealing with this month. That’s where I’m at with life, the universe and everything and I’m feeling pretty optimistic. And that even if this new medication does not help, I’m confident that this provider will continue to pursue treatment options and isn’t going to leave me in really high uncontrolled pain the way that I have been for the last five, six years. That makes me feel really good.

I just want to remind everybody that you don’t have to stay with a physician that is not fighting your case, that’s not working towards the same goals as you are because it is your body and it is your life. You’re the one that has to live with the consequences of the choices being made. So when a health care provider looks at you and says, “Well, your pain is good enough, your control of your pain is good enough” and you just don’t agree with that and you don’t feel like your pain is well controlled. You always have the right and always should go and get a second opinion. Know that you’re not stuck with this one person. Please, always advocate for yourself.

I feel like I had some success self advocating this time around but it doesn’t always go this well. Sometimes I see a new provider and I feel like they’re just as bad as the provider I left. But yeah, keep looking for answers. If you feel like the doctor that you’re talking to isn’t hearing you and isn’t fighting on your side.

I hope that all of you are well and that you’re all in a place of good stability. So you guys take care and until we meet again, stay well.

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