Long story short, things have taken a drastic turn. I don't know if it's my Endo causing my health spiral, or a combination what pots or what the fuck going on.
Even though the PoTs symptoms I've been experiencing have been going on since I was around 13 (i'm 28 now), in November 2023 they took a nosedive, resulting in the diagnosis of PoTs, vasovagal syncope and cardiac dysautonomia. I'm not on two types of medication, and should be thrilled after years of gaslighting and trauma that I finally have a diagnosis.
I'm confused. Not about the diagnosis time, having Endo too so am no stranger to having my pain and symptoms ignored, but why after so long has it gotten so bad. I've never been healthy, my endo can keep me on a pretty tight leash, but I seem to have lost so much in the last 5 months, more than I have in many years. I used to drive, go on walks, go to the gym. Yes, my spoon count would be effected, but I had learnt to manage it.
They took away my drivers license, so I'm feeling more of a burden than normal. I can't walk to work instead because walking for more than 15/20 has suddenly become impossible without an onslaught of symptoms. It's to the point that we've had to debate a wheelchair for tasks like doing the weekly shop. Last year I'd began accepting some sort of mobility aid for bad pain days, now all of a sudden I'm looking at mobility scooters and wheelchairs. I'm 28. I'd gotten pretty good at ignoring the stares and whispers from people who don't see anything physically wrong with me, but the looks whilst trying a wheelchair just pushed me over the edge.
I'm normally such an advocate for chronic illnesses, but right now I'm just stuck in a loop of thinking how unfair this is. I was doing okay, I had adapted to the chronically ill life finally after years of accepting it as part of me, but this? I'm constantly exhausted, my fatigue is in overdrive, I've lost my independence and don't even recognise myself.
I got married in October 2023, and I can't even recognise the person in the photos. Where did she go? She could drive, was preparing for a honeymoon where she only had to worry about the other CI's she'd gotten used to dealing with. She was on her feet most of the day, and first and foremost, she was happy.
I feel so guilty for my husband, who has had to witness and deal with more since we've been married then in the 9 years we've been together.
This isn't really a post asking for anything. Every year or so, I've ended up letting out my feelings in my Endometriosis community, but I don't have one for PoTs. I'm just upset, and lost, and struggling to once again have to accept my new normal. I dont know what symptom is coming from what CI, I'm due to have my coil out this year and I'm just angry and sad and feeling sorry for myself.
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Nemofudge
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Nothing wrong with feeling angry and sad and sorry for yourself. It sounds like you had a drastic change within a short space of time and that’s hard to cope with physically and mentally. I’ve had endo & adenomyosis since I was 19 and I’m nearly 49. Been through periods when it was a manageable and you could live a life but then it became constant despite constant operations every few years - it’s tiring, like you just get used to it then something changes!
I think if you can then get a counsellor it’s good to have the emotional support and to have someone point out how much you actually do despite being disabled. I don’t know anything about Pots but maybe you could reach out to another group and see if others symptoms, flares etc. fluctuate - it’s good to not feel alone with these diseases.
Hi, I wish I knew what words to say to take away all the pain and bad feelings but of course they don't exist! I will say my heart goes out to you and I'm so sorry that this has happened to you.
Recently a friend of mine posted on instagram that she was feeling similar with a lot of guilt on her husband and others. She told me multiple men reached out to her that were partners of chronic ill patients saying trust me, he would not be better off without you, none of us feel that way in the slightest, we all still love our wives and want them in our lives regardless of the illness. I don't know if that helps but I'm sharing because it helped me a little with the guilt I've been feeling.
Yesterday as well I met a lot of endo patients at an event that spoke about getting surgery in Bucharest. It's meant to be the best place in the world for endo surgery. Would there be a similar option for you for your other condition? If where you live is failing you, maybe it's time to look outside?
Sorry if this isn't helping but I wanted to at least reply and let you know I read your message and I am sending you a lot of lpve. I hope there are better days ahead for you xxx
Could the POTS have been exacerbated by Covid? I’ve been left with autonomic dysfunction since my three bouts of Covid. Between endo and autonomic dysfunction, I’m completely screwed! There is no help. Gp has been useless and all I’ve been offered is beta blockers which do nothing.
I think probiotics have been helping. It is all to do with the vagus nerve, also research indicates low serotonin, which is made in your gut and transported to the brain via the vagus nerve. This makes sense to me as being so low with endo then the whammy of Covid messing up everything.
But I still can’t figure out next steps in healing esp whilst dealing with pain, fatigue, endless sweating and constant urination. The nausea and everything else. I just have to be horizontal all the time!
Sorry no help. But you are not the only one. Is ehlers danlos one of your previous chronic illnesses? As there is co-morbidity with POTS.
Hi Nemofudge, so sorry to hear of your health challenges. My youngest daughter now 43 had chronic health issues - some sound similar to yours - for 12 years. Now she’s leading a normal life again 🙏🏼 She first found out she had Lyme disease & spent years trying different treatments for the myriad of symptoms associated with Lyme. Gradually she began to improve apart from ridiculously heavy periods & abdominal pain. After numerous tests over a couple of years she discovered she had stage 4 endo, a huge fibroid & ovarian cyst. Now after surgery she’s feeling like a new woman & has her life back so never give up however long the fight is - you’ll get there in the end.
PS. Have you looked into Lyme? I’m also Lyme positive & believe I passed it in utero to my 3 daughters. They have all been affected in different ways & followed their own health paths but thank heavens lead life to the full now. Stress is a big factor in all this - it makes symptoms so much worse so do anything you can to reduce any stress in your life. Wishing you all the very best in your own journey back to health 🙌 💖
hi may i ask what where your symptoms of pots, i’ve recently been found to have endo which explains some of my issues but i am constantly fainting almost every day and i’ve been to doctors almost every day and they can’t find anything abnormal that shows i may be passing out. i judr feel so tired of keep having to get answers and i’m confused on why i’m fainting the tiggers seem to be hot showers , standing up and fast movements.
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