34F, please help, feeling lost on next steps
TLDR: Suffered with chronic symptoms for years, rough timelines included, hoping to get pointers on what I should try next.
Hi everyone,
So heads up, this’ll likely be a very long post because I still feel lost and it pretty much needs to be a life story haha.
As the title says, I’m 34F and have struggled with tiredness for most of my life. There’s a lot of details to add which are likely all relevant so I’ll do my best to explain it all and include as everything I can. I’ve gone off on many tangents trying to figure this out over the years so I will probably do a bit of back-and-forth story telling. I would just really love to know if anyone can confidently advise me on what tests to have/specialists to see next. I don’t want to waste any more time, money or hope tbh. There are lots of symptoms I deal with, as you’ll find out, but this fatigue ruins my quality of life the most.
Thank you so much in advance to anyone who replies - if I get a lot, I will read it but definitely struggle replying to everyone. I’ll check back regularly and add more to the original post for answers to questions that need to be included/things that I forgot.
So let’s begin this marathon… I’ve had lifelong issues with attention, cognition, memory, emotional dysregulation and social interactions. Then, I feel like the symptoms I struggle with now may have originated from when I was put on birth control at 16 (Rigevidon 150mg - combined pill). I ended up being on that for 11 years, then Desogestrel 75mcg for a year, then Norgeston 30mcg for 3 years. I came off hormonal birth control in September 2013, and have been off it ever since.
I was originally put on the combined pill both for birth control and to ease my very heavy and painful periods. For the first few years of my period (started at 13 I think), I needed to use menstrual products for heavy flow and I’d regularly pass clots/fleshy pieces. Then during the other parts of my cycle, I’d shed a lot of mucus and would need panty liners. This pill was convenient and I didn’t notice any adverse side effects, but looking back, as I mentioned, I think this is where things started going more downhill for me. This is what started happening, slow enough for me to not put two and two together, and also because being on the pill was completely safe and everybody did it and it was fine, right?… I didn’t even consider questioning it. Life also had its changes, like it does, so I was distracted.
- Depression and anxiety - I was always sensitive, but my moods didn’t bounce back as much any more. Low moods would hang on for a long time. Emotions would be a lot more disruptive to myself and those close to me.
- Daytime sleepiness. I don’t recall falling asleep in lessons until after this age, or feeling like I needed to sleep much longer than average, only to never feel refreshed, just more tired.
- I started feeling more spacey, so much so that life started to feel like I was “in a dream”. I could recall less, focus less and retain less.
- Libido and sensations began decreasing from here
- Recurrent UTIs and thrush despite one long-term partner and ensuring we stuck to all the necessary good hygiene. I’d regularly experience pain, irritation and bleeding during sex.
- My overall skin tone and circulation changed. As a kid I used to go brown in the summer and I was tolerant to the cold. I used to swim in the ocean in the colder UK months (crazy I know). Now I was noticing my feet were cold and purple most of the time, and my hands were usually cold too. This has worsened with age and I’m very intolerant to the cold now, with mottled skin even when I’m warm.
I’d then gone to the GP and been diagnosed with depression/anxiety. So I was on various antidepressants for a while, each with their horrible side effects. Fluoxetine suited me mostly great, and I stayed on it for well over a year because it kept me so stable. I’ve always been one to cry a lot - nearly always from frustration tbh. I have big, horrible, disproportionate emotions and have always felt a lot of shame around them. I struggled to communicate for most of my life too, which led to being misunderstood both by others and myself. Anyway, Fluoxetine gave me a blissful break from all that, but unfortunately it completely crushed my libido and my ability to reach orgasm, and I couldn’t keep putting up with that in the end.
Once I was in my mid-twenties I was told I had to find an alternative birth control, because a risk of blood clots became apparent due to the fact I have occasional migraines with visual disturbances. My periods disappeared completely whilst taking the first mini pill I was on. I realised this made me uncomfortable - my body needed to go through its natural processes - so I changed to another pill. My periods came back so light that they were barely there. Since then, I’ve not even needed to even use menstrual products during my cycle. Everything comes out when I go to the toilet (and I’ve wondered whether this is a tight pelvic floor issue).
At 30, I got diagnosed with ADHD. At the time, this felt incredibly validating. It explained so much. I trialled a couple of meds and ended up feeling the best I’d ever felt on Amfexa. 20mg 3x daily. My energy and motivation was consistently high. This has been the only thing that has ever worked reliably and consistently for my tiredness (although there were still parts of my cycle where I’d not feel the effects).
Early 30s I went through a period of intense stress, and ended up getting all these symptoms that looked like low oestrogen (after obsessively researching). I started noticing blood on the tissue after wiping sometimes, and discovered I’d developed a urethral caruncle. I went to a doctor who confirmed it for me and referred me to a gynaecology waiting list. The blood started coming heavier and more regularly, and it got to a stage where blood was streaking the toilet and I was passing clots every time I urinated. I couldn’t get any doctors to help me because all they’d do is test for a UTI, which I repeatedly told them it wasn’t (lo and behold negative results). I also couldn’t afford to pay privately for a specialist. So after reading and reading, I decided to stop taking the pill to gain some control of this escalating situation. I’d made a good call, and the bleeding thankfully stopped within a couple of days.
The caruncle still “flared up” and bled every so often, usually after straining from occasional constipation. Sex wouldn’t aggravate it so much.
I haven’t checked recently, but I think it’s probably still there. This whole situation might be related to the tiredness, probably, maybe, I don’t even know.
I moved to New Zealand early 2024 and my health has since declined. I’d ran out of my UK meds so the tiredness came back. I got a new ADHD diagnosis here but the same ingredient meds available don’t affect my body the same. I have been battling with this fatigue ever since, that now seems to be worse than ever. Nowadays a lot of what I deal with looks like chronic illness. I’ve been looking into/speculating about POTS, EDS, ME to name a few. I am absolutely not diagnosing myself with anything - but I can’t help but notice when things look like they’re lining up for the potential.
I got these blood tests (results attached) and a hormonal saliva test done recently. I’ve since been on a high-quality iron supplement, DHEA and bio-identical Progesterone cream (2x daily from cycle day 12 to period, for 3 months). Although necessary, I don’t think those things have touched the tiredness, I still feel like crap and am still unfortunately dealing with the following:
- I’m so prone to uncomfortable trapped gas that I can no longer wear normal clothing. As soon as something puts the slightest pressure around my mid-section, it triggers this and it’ll last all day. This started at about age 21 but I didn’t know where to mention it earlier. My gut motility has always been slow and irregular. No correlation with anything I eat or drink. It would be great if I could just poop every morning, but sometimes I can’t go for days, then it’ll be 4+ times in one day with cramps beforehand and a million wipes before I’m clean. I have tried many things for this. Occasional constipation.
- Lower back, pelvis and hip pain that started years ago with no obvious trigger, and have recently become really bad. I’m seeing a third kind of specialist for this at the moment. Very painful tightness in the soles of my feet, my calves, thighs and glutes. After some muscle testing, some muscles weren’t firing at all. I have exercises I need to do, but I need more energy to consistently do them. I’ve been told I have an anterior pelvic tilt, stuck/twisted ribs, issues with multiple vertebrae and one leg shorter than the other.
- Standing is uncomfortable even without the pain just mentioned - my body feels increasingly tired, achy maybe. I feel much more comfortable at rest, sitting or lying down. My circulation seems worse than ever, feet and hands are always cold, and my limbs will differ in colour/temperature if they’re at different elevations or one is moving but not the other. Looks to be blood pooling. Parts of my body become uncomfortable and ache/hurt very quickly in different positions so I fidget and shift position all the time. Showering tends to take a lot of energy, and sometimes I need to sit down to get through one. When I manage to exercise, it’s rarely enjoyable and I tend to feel worse afterwards (it seems that I get post-exertional malaise).
- My heart rate and blood pressure are elevated, and spike easily. I can feel when this happens. This will be partially because of the stimulants I’m taking. Sometimes I’ll feel faint and eating makes it better.
- I don’t have much in my energy reserves as standard, but every day varies so much and is so up and down. Some days I struggle to wake up, and can’t really function. Brain fog will be extreme, body will feel incredibly heavy, and mood will likely stay low. Sometimes I’ll feel okay until I eat, then I’ll feel utterly drained and need to rest more (usually in the morning or maybe after something high in sugar if that happens). Sometimes this hits unexpectedly partway through the day and the only thing I can do to help it is go to bed. This has happened so many times at work, and I physically cannot make myself concentrate on my work. It’s like I shut down both physically and mentally.
- I have real trouble retaining information and tend to need lots of repetition before I understand/remember certain things. This is particularly bad for topics that are more complex or if I’m not naturally interested in them. I also zone out involuntarily when I’m trying to do something else. The worse I feel, the longer it takes me to find the words I want to say. Sometimes I take a really long time to get a sentence out because I get stuck and can’t remember words even if I use them regularly. Historically I’ve felt so much shame about this, but I’ve been working on it and am much better at being kind to myself now.
- Have always had fine hair and lots of shedding, but this increased dramatically more recently. I shed so much that I no longer wear my hair down because of all the gaps. I’ve been using products for this, and the shedding has decreased hugely, thankfully, and lots of baby hairs are growing all over.
- Libido is still low, periods are still overly light, producing more mucus between cycles but I feel it’s still not as much as I should. I have recently felt irritated and itchy down there, without clear reasons or relief from what usually works for me (maybe it’s the Progesterone)
- I have tried SO many things that seem to work at first, for them to then stop working. Every. Time. I cannot tell you how many times things have looked briefly promising, and I get my hopes up, and then I’m back to feeling like I’ve been hit by a bus. The constant, ongoing disappointments of varying size for so many years have been soul-destroying at times. I have been overcome with pessimism and negativity which sucks both for me and those around me. I’m tired of being so tired, having to rest because my body can’t handle a normal quality of life.
Interestingly, despite these symptoms, I seem to have a great immune system/resistance in other areas. I rarely get ill or catch colds, coughs, flu or infections of any kind. I don’t think I’ve ever had the flu or tonsillitis. I’ve never fainted or had a nosebleed. I recovered quickly after having my wisdom teeth removed. I didn’t realise I had Glandular Fever because I had no symptoms. I don’t have hay fever or any known allergies, although the single allergic reaction I’ve ever had is breaking out in hives from eating scallops here in New Zealand after never reacting from eating them back in the UK. I don’t think I’m otherwise intolerant to anything, unless everything I’m dealing with is actually intolerance, I really still don’t know. I’m otherwise so grateful for these things and they may or may not be relevant.
Okay, I think this is it for right now. There is definitely so much more to add, but right now I’m done cuz I can’t think straight any more. I’ll check back soon - thanks again in advance if you’re taking the time to read and reply to this. Thanks also for understanding that this takes a lot out of me and that I’ll answer follow-up questions as soon as I can.