fibroids and adenomyosis diagnosed - suspicion of endometryosis
Hello,
My diagnosis so far, after a couple of years of chronic pelvic pain, nausea, digestive issues, migraines, mental fog, horrific PMS that can last up to 2 weeks, extreme fatigue, insomnia...etc. is of fibroids and adenomyosis after two MRIs.
No mention of endometryosis has been done , however, I believe my symptoms match endometryosis more than anything else (I have very light periods, but the pain is there). The most bizarre part, probably, is that my symptoms are at their worst outside of my period (the last two weeks of my cycle), which I think nobody fully understands why. As I cannot deal with the side effects of hormonal treatments, surgery has been offered as my only option to improve my quality of life. I have been too scared to get surgery during the last year, but I am now struggling too much, to the point of not being able to work, and spending most days sitting or laying down at home. Anyone here with fibroids as well that can tell me about their experiences? Should I get my laparoscopy done ASAP, or should I find an endo specialist first and get checked further? I am really desperate to find some sort of relief, but I also want to be able to find the best specialist I find before getting surgery. I have no support system, family, neither friends to help.
Thank you all
ziam Thank you for sharing with us, and I'm so sorry that you're dealing with such intense symptoms. I also had horrid symptoms the last two weeks of my cycle, and for me, it was because estrogen was one of my main mast cell triggers (I have MCAS). Perhaps there is some other health condition that you have that's playing a role in that.
My suggestion would be to try to find an endo specialist...they are going to be the best person to get surgery with in the end. While doing a lap ASAP will likely bring relief, you may end up needing a second surgery with someone more experienced. I say that as someone who had incredibly awful symptoms, so I know how much of a struggle it can be just to get by day to day. Do you know where to look for a specialist? This is the web site I always recommend: https://nancysnookendo.com/find-a-doctor/.
Please feel free to send a private message or post here again if you have any questions for me. ~Katrina, Endometriosis.net Advocate
Firstly, so sorry you have been having such a tough journey. Those symptoms are absolutely no fun to have to deal with and I could not relate more
to everything you mentioned. If scans is all you have had done so far, there is a good chance they are missing endometriosis. I have had numerous scans and
none of them ever picked up endometriosis. So if you are feeling this is for sure something you think you are dealing with, I think your next best step would be to
seek out an endometriosis specialist who could talk more with you and provide surgery to help with that diagnosis. I too have fibroids and I will say, surgery to have them
removed really helped me. Of course, they can grow back so it isn't a cure, but in that moment, it absolutely helped and was worth it. I had them removed 3 years ago now and they
haven't grown back yet. I am suspected to have adeno too, but the only way to cure that is a hysterectomy and I am just not ready for that yet. But if you can manage everything else going
on, maybe that will help with some of the symptoms for you to find some relief. Check out the website Katrina provided and do let us know if you have any questions. And feel free to message me anytime
you need to chat. Here for you. Hoping you find answers and relief soon. -Kimberli (advocate)Thank you very much for your replies, I really appreciate the support.
I think I have been in denial regarding the surgery, I have a phobia of surgeries. At this point though, it seems that I have no other choice but to look for ways to improve my health, or else remain disabled and in pain for who knows how long.
I guess the worst part is the impact such health issue has in the life of a person, socially, mentally. I see the world in a completely different way now, always negative, full of fear, always uncertain, unable to make any plan or have any sort of project or dream. I feel my disease defines me. I don't dare talking about it. Most people don't understand or don't know how to interact with you after you tell them.
Excuse my English, I do my best, but I am not a native (I am a Spaniard living in Belgium).Hello, I wanted to add another question, as today I visited my doctor again.
I told him about my concerns. My only diagnosis so far is fibroids and adenomyosis, but my symptoms strongly suggest there is also endometriosis involved. I have too many symptoms for them to be caused only by a 5 cm fibroid (the rest are really small). He agreed, and again told me that the only way for him to treat the fibroid and to see and diagnose the endo is through a laparoscopy. He keep repeating that idea. He made it clear that he will remove fibroids and only treat the endo if he sees it and is able to remove it. This sounds as if I am potentially going to need separate surgeries to treat both conditions properly and be completely "clean" or "done", at least for a while. The question to ask was simple but yet, I find it really hard to speak with a surgeon, and was not able to formulate it properly (I guess I did not want to sound as if I did not trust him, or as if he was not enough as a specialist): are there specialists that can treat both conditions at the very same surgery? or am I asking for something completely unrealistic?
Thank you for your points of view!hello there! I am glad you were able to see your doctor. And, I totally get the fear of surgery. It is a big decision to make. But your doctor is right, the only way to remove the fibroids is through surgery. And to officially diagnose and remove endometriosis as well. Fibroid removal and endometriosis removal can all be done during the same surgery. All of my surgeries I have had, they had done it all together. There are endometriosis specialists - if you go to Nancy's Nook, a Facebook group, she has a list of endometriosis specialists that you can search for and see if there are any in your area or surrounding area. If not, I would just make sure your doctor now, will be doing excision surgery, not ablation. This article right here will help you understand the difference of the two- https://endometriosis.net/clinical/excision-ablation Here is a little bit about finding an endometriosis specialist https://endometriosis.net/clinical/find-specialist and here is the Nancy's Nook link as well, https://www.facebook.com/groups/NancysNookEndoEd/
Hope this helps answer your questions! Please reach out if you have any more questions or just need to chat. And do keep us posted on how everything is going too! -Kimberli (advocate)
