The fun thing about hormones is…

… there is no fun thing about hormones.

I always feel good about life when I’ve seen my lovely GP. She’s just so understanding. She gets that medical ideals are not always possible when you live with a chronic illness. She pats me on the back when I’m succeeding and allows me days when motivation and will to go on is flagging. I’ve not met many doctors who can look past a diagnosis, medication and pain and actually see that the person they are dealing with is a human being, just like them. A human being whose 10.30am problem does not go away when the GP goes home at night. It chips away 24/7 until they next see the patient a week or a month later. Sometimes my EDS is beating me, and sometimes I’m the one on top. Its swing and roundabouts, and my doctor understands this.

Today we discussed my pill and how my pain is in relation to my hormones. I’m about 3 months into Loestrin 20 which Dr L says isn’t ideal as a contraceptive, but it is a second generation progesterone pill containing norethindrone as opposed to a true progesterone – it’s thought that this should have less effect on joint laxity. Well… I don’t know how much it’s affecting my joint laxity, but my pain is horrendous. Pre-pill days, I had better days but also particularly bad days. Now, I just feel like my body had all-over toothache 24/7 with super angry bits depending on use/injury.

Gynaecology want me to take three packs of the Loestrin 20 without a break, stop for a week and then take three packs without a break. Basically, they want to see what happens when my hormones aren’t fluctuating as much. I don’t think that the problem is 100% the hormone fluctuation, but the simple presence of them. My gynaecologist’s answer to this is to try an injection that basically puts you into a temporary menopause. It’s kind of scary, but the idea of my ovaries not pumping out any hormones and making my boobs feel like human pressure cookers IS appealing…

Because the pill is causing me so much pain, my sleep is awful. My ankles, wrists and hands are particularly angry. Pain relief is sort of a moot point, so we’ve opted for a few Zopiclone sleeping tablets. They make me feel like ass the next day, but I’m willing to pay that price of the occasional night of good sleep. I need to hang in there on this pill for a bit longer to really give things a chance to settle. I don’t have high hopes, in fact, I’m pretty sure I’m just going to feel increasingly crap on them…

The Dymista nasal spray from ENT is wreaking havoc with my sinuses and making my eyes sore, so I’ve to stop that. The down side of this is that my consultant is now going to push for surgery to straighten my septum, reduce my turbinates and put grommets in my eardrums. She’s really nice and is also putting me forward for immunotherapy with the hope of reducing the 5 antihistamines I take a day. Turns out these antihistamines dry out your nose and sinuses which is problematic when you’ve had life-long ears, nose and throat problems.

I don’t want surgery, but it’d be really nice to be able to breathe without pain, constant sinus infections, ear infections and the other hoard of problems that live in my face-plumbing.

Ren x


8 thoughts on “The fun thing about hormones is…

  1. twiggyjen44 says:

    Have you tried a neti pot? I’m guessing you have. Hubby has a bad deviated septum, and any little cold or infection he gets takes at least a month to recover from without the neti pot flushing through things. He doesn’t have the allergy problems you do, though. Also just in case, have you looked into Mast Cell stuff? Or Sjogren’s? I’m pretty sure my Sjogren’s is secondary to EDS stuff. I’m definitely curious about your hormone experiments. Still back and forth on the endo/GI debate on this abdominal pain since the Depo wearing off seems to be having an influence still for me. (You may have answered all those questions in previous posts, but I’m not in the full-blown creeper mood today.)

    Liked by 1 person

    1. brokendownbody says:

      I have a neti pot! But it just stings putting anything but neilmed gel up there because the antihistamines dry it out so much. It’s really not nice. It makes me feel better that I’m not just a drama queen when I get the sniffles!! Hahaha. I’ve always wondered how people can work with the cold, it absolutely floors me.

      Regarding mast cell stuff… The guy in charge of immunology in Aberdeen “doesn’t believe in it”… I mean, i am legit allergic to the entire world – as per my prick testing. Immunology palmed me off with fluoxetine 3x daily and cimetidine 2x daily. ENT are the ones wanting me to go for immunotherapy injections, so i might ask them about MCAD.

      I had no idea my septum was so squint. I guess I’ve always seen an ENT doc that likes ears, maybe it was good to see a different person who is enthusiastic about noses?!

      I was off depo for over a year and my hormones STILL wouldn’t settle – ergo trying to regulate them a bit with a low dose pill. I’m thinking more and more that my body cant cope with it’s own hormones – why am i feeling it more?!! Gah.

      Liked by 1 person

      1. twiggyjen44 says:

        That’s concerning, with all the research I’ve seen, that he doesn’t believe in MCAD. I’d definitely talk to someone else about it. Maybe even a third person. I hope you can find the right pill to level things out. I was never able to tolerate any of the pills they gave me before, which is why I was on Depo previously for years and why I decided to give it another go. Definitely had a very different effect this time, and it should be worn off by now, but it’s still affecting things.

        Liked by 1 person

  2. bowermanland says:

    Oo, I wasn’t allowed to have my septum straightened because of my EDS – the surgeon said it wouldn’t heal and it would float or even die. Today I had a camera put up my nose and down my throat because of all the problems. Euuugh.

    Liked by 1 person

  3. squidgeaboo says:

    I am on Mirena, my 3rd one now, and it’s been quite successful for me. No breakthrough pain, no bleeding. I have severe endometriosis, so controlling the hormones was a major priority. They once removed my appendix, sure I was having an attack, when it was just my period. Havent tried Depo, though. As for Zopiclone, I went down to 5 mg from 7.5 mg and still found them effective. What strength are you taking? Still effective-now feel less like ass! Their new slogan 😂

    Liked by 1 person

    1. brokendownbody says:

      3.75mg – I am so hardcore. I’m so obscenely sensitive to medication. Gah. It just makes me feel hungover the next day and makes everything taste like metallic vomit.

      I really can’t make myself okay with the Mirena. I’ve talked to my GP at length about it and I’m just not okay with something so invasive after all the poking and prodding when I first got problems with abdominal pain. It’s left me with quite a lot of anxiety regarding people prodding around my bits.

      Liked by 1 person

      1. squidgeaboo says:

        I am probably a lot bigger than you are, too. I am not very sensitive to medication, in fact I was joking with a friend about the poor sap who ever tried to roofie me. Not that I particularly want to try…

        Totally get it about the Mirena. Have had a couple of IUDs before and after children. I am very sensitive, I have what they suspect may be a trapped nerve in my pelvis, so I can’t even have someone touch me on the outside of my body without flinching. If you have a good doctor it doesn’t hurt on insertion, but is uncomfortable when the arms descend for a couple of hours after. Once I started being shown off at teaching hospitals and having surgeries and 2 c-sections it got easier. Ask me anything. On my site there’s an email. Email me at any time. Any questions at all.

        Liked by 1 person

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