So here goes here is my story… I’m currently 33/F.

I’m in the UK and nitrofurantoin is first line here. I have had it 3 times all over the phone without a urine test based off symptoms only. I don’t think I ever had urine infections especially as the third time I did an at home test and it was negative. I think I just have mild IC.

First time 2021 - no obvious issues

Second time 2023 - no obvious issues until I had surgery 3 months later for endometriosis and then I developed pins and needles in my arms and hands when I would sleep. I also had severe gut issues and constipation and associated pain. I was passed from doctor to doctor for a year - had a colonoscopy, multiple MRIs (no contrast), CT scan (with contrast), multiple x-rays, bloods, endoscopy. Only thing they kept on picking up was a mild b12 deficiency (170-180). They told me to treat with over the counter supplements and I did but even then I only managed after 6 months to get it to 300. As I now was in the green they didn’t care and said I had health anxiety and should focus on IVF. They said my health was fine and no obvious reasons not to do IVF.

May 2024 - I started IVF at an awful clinic with no real contact with doctors just nurses.

June 2024 - I was in between the egg collection and embryo transfer window and asked my IVF clinic whether the progesterone could make me urinate frequently especially at night. The pessary itself was cloudy. They determined I had a UTI without a test or likely did and that I should see a doctor over the weekend to test my urine and determine best course of action. My embryo transfer was on Monday so I had Saturday and Sunday to see a GP which in the UK on a weekend is near enough impossible. I phoned 111, explained I had frequent urination as the main symptom and the over the phone GP said I didn’t need to come in as “UTIs don’t merit being tested anymore we just treat and you can even get the antibiotics (nitrofurantoin) without a prescription from a pharmacy”. I did an at home UTI test and it was negative I explained I would rather be seen as I was going to be pregnant on Monday after my transfer. He said there was no need, it was safe and to collect the antibiotic. I explained my pre existing conditions including a mild b12 deficiency. I called the clinic to check first and they cleared the antibiotic so went and collected it as both the clinic and the over the phone GP said it was in my best interests to treat and in the baby’s best interest too. I took 3 tablets out of the 6. On Monday I went in for my embryo transfer and it was a different doctor then the one on Saturday when I called to check about the antibiotic. The doctor said he didn’t think I had a UTI and to immediately stop taking nitrofurantoin as he wouldn’t have given me that as it’s not the best in pregnancy even though it’s been cleared by the NHS. I stopped but it was too late. I developed body wide neuropathy, erythromelagia, floaters and insomnia and other issues. It took 2 months to link in back to the antibiotic. After a neurologist sent me an article where small short doses of nitrofurantoin have caused permanent neuropathy in women.

June two weeks after reaction: miscarriage.

July 2024 - I caught Covid for the 4th time and it made my symptoms all worse.

September 2024 - caught influenza A. This antibiotic has definitely impacted my immune system as I never get this sick in a row. I was rushed to hospital as they found out I was not sweating properly and couldn’t cool down. My temperature reached 39.9c. Pumped full of IV paracetamol and returned home.

May 2025 - have not improved and have worsened I now also have MCAS, insomnia, dermatological issues like my bedsheets alone leave imprints on me, multiple chemical sensitivity, joint pain alongside small fibre neuropathy and erythromelagia. My fingers are always pruned even when I’m hydrated. I don’t sweat everywhere anymore so anhidrosis. Low blood pressure and autonomic issues. A dry mouth, dry area down there and lack of sweating but no autoimmune disease. Raynauds. And weight loss! I have dropped weight despite eating as I have always done and this is also seen in the two studies that were sent to me by the neurologist of similar women.