What have I got?

Hi

doctor is referring my to a gyno, what will happen? I'm 34 and been on the pill most of 15years, everytime I decide to come off it my period pains are unbearable that I go back on the pill. About 3 months ago I went gluten free as was having digestive problems, loose bowels for a long time! Acid reflux, bloated, burping, nausea etc. The gluten free seems to help but I still wake every morning with terrible pelvic pain, feels so tight. One doc just put it down to ibs! I came off the pill after going gluten free as fed up with putting hormones in my body for so many years. 4 weeks ago I got terrible cystitis then back ache. Ended up taking 3 different antibiotics. And then got thrush!! Back is still sore and pelvic area especially in the mornings. I get up in the night to urinate. I also feel nauseous mostly all the time. I am very confused with what's going on in my body. I'm glad doctor has referred me to gynecologist, not sure how long it'll take or what to expect. Does this sound like endo or something else? ?

4 Replies

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  • It's hard to be sure whether this is endo or adenomyosis or fibroids or hydrosalpinx or any number of other gynae conditions if any of them - or whether this is partly a persistant UTI issue caused by something like ecoli - which hides behind layer of biofilm in the bladder and may need weeks and weeks of different anti-biotics to finally break through the biofilm layer and kill it off.

    Ecoli is super friendly with endo they encourage each other to grow in harmony and ecoli is a very common bacterial infection for ladies with endo.

    Parent bugs hide in biofilm (which your body grows) and keeps the bugs safe there. When the coast is clear of all antibotics out come the master bugs or parent bugs to create millions of children. These children bugs don't hide behind biofilm... they are the ones who cause painful and frequent peeing issues. They are the ones who will easily die off with any antibiotics, giving your some relief - but it is only short lived relief until those parent bugs find the coast clear and replicate like crazy again.

    So many antibiotics these days do not break through biofilm. These are the ones your body has built up a resistance to from previous exposure to antibiotics. It can take a long time and a lot of discomfort to find an antibiotic to actually zap parent bugs.

    The thrush is sadly a common hiccup we all can get after antibiotic treatments. Luckily it is easy to solve but it is annoying.

    It sounds likely yo do have more than one thing going on here at the same time. The bladder issues may or may not be directly associated with endo... of perhaps a cyst pressing on the bladder or something else.

    First steps are to treat the bladder issues as a priority - and keep treating them if symptoms don't improve.

    Also ask for a referal to a gynaecologist to begin looking for answers to your symptoms.

    Ultrasound scans may not see endo - but can rule in or out lots of other gynae conditions.

    and may even spot clues that there is endo there - such as adhesions or endometrioma cysts.

    If you do get a lap op to diagnose endo - then do consider having mirena coil inserted instead of using BC Pills.

    It is only 20% of the hormone dose of the pills and works for up to 5 years without the faff of remembering taking pills. It usually stops your periods in bout 4-6 months fro it being put in. You just forget it is there. The worst bit is inserting in - and if you get the opportunity to have that done while you are out with a general anaesthetic and know nothing about it then I thoroughy recommend you take up the opportunity.

    If you are found to have endo - then finding a long term period stopper is the best way to have some expectation of reducing the likelyhood of new endo spreading after a surgery to remove the existing endo.

    It does take setting in time to begin to work but once it kicks in and is working it is life changing to be rid of the periods, pains, PMT etc and all at a much lower dose in the body than the pills.

    I wouldn't mind betting you do have endo or adeno from your symptoms - so don't give up trying to get a diagnosis surgery. It's the only way to be sure of endo and the extent of the disease.Adeno is normally identified from MRI scans or ultrasounds spotting a thickened or bumpy uterus muscle.

  • Hi, just to say that, like you, my symptoms only started when I came of the pill at the end of last year after 15 years on it. Initially started having nausea and pelvic pain and after an ultrasound found a cyst in one of my ovaries. I was referred to the gynecologist and officially diagnosed in July with endometriosis and adenomysosis. It will be really useful if you track your symtoms to see if they get better or worst at certain times of the month. I had been keeping good track of them (because I am ttc) and the gynecologist was almost certain it was endo because of my symtoms being cyclical, even before he sent me for an MRI to confirm.

    Nausea was one of the worst of my symtoms and I had it for almost 2 weeks each month (before ovulation and before period) and that seems to have settled down in the past couple of months. I think that maybe it is because my hormones are more leveled after 10 moths off the pill. I do get loads of back pain instead though.

    Hope you get to see the gyne soon and get your diagnosis (and treatment) x

  • Thank you for your input. I have started taking a supplement D- Mannose for a healthy urinary tract. Although I still think there is something else going on as the pelvic and back ache, intense period pains and nausea. Will see what gyno says. Sad too discover there are so many people suffering with endo. Annoying when one doctor told me I must have ibs as we all know when our body isn't right.

  • Oh I thought the thrush had gone after using suppository and eating live yogurt and taking pro biotics but it seems like it's back.

    Got appointment with gynecologist next week, very anxious, not sure what to expect.

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