I have been getting different symptoms than what I usually get with endometriosis for a few months now.
They are getting worse and I’ve seen my GP a few times but all I’m getting out of them is it could be related to my endo, related to the medication I’m on for endo or something else. We have no way of checking so how do you feel about coming off your endo medication.
They just leave it at that but I’m getting worse and worse. My fatigue is so bad right now, I sleep around 10 - 12 hours each night and then fall asleep for hours again during the day. I’m either freezing or having hot flushes, nothing in between.
I’m also having issues with urination - need to pee far more frequently than before and my stomach is bloating after peeing.
my hair is also falling out so badly, I’m getting bald patches
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Endowarrior1807
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The peeing thing could well be linked to your endo, it culd have moved on to your bladder, kidneys or uretha, so you should get an ultra sound scan for that and the GP could do a absic UTI test and send od your pee for a further detailed test.
The temperature issues could be down to your age or could be thyroid related. Your GP should give you a simple blood test to see if there is anything wrong with your bloods.
The hair falling out must be very worrying but that can be caused by stress or be caused by allopeccia there must be tests docs can do to check for that and the contzstna tiredness could be anything vitamin deficiencies, fibromyalgia , M.E thyroid issues etc.
The GP needs to look at your symptoms and investigate them , that is what he/she is paid for.
ASk the GP full or full blood count test, a scan on your kidneys and bladder system to see if the endo has spread there, and to do whatever tests they use for hair loss. In fact tell your GP to do this , explain you are really suffering feeling terrible and at your wits end and need these symptoms looked into. Good luck xxx
I'm the same. My meds aren't working as well. I've been pushed from pillar to post and decided I would pay for an mri to see if my endo has spread and to where. I told my gp I wanted referred to 3 private hospitals on the 27th of March 2023. I've phoned the hospitals to see if the referral has come through yet but it has not. I've been offered more appointments for mental health issues though straight away! I have turned those down twice and repeated I want my referral. The Dr is stalling or she's not getting the messages from reception so for the sake of an extra £200 I might as well pay for a new consultation fee with one of the hospitals .Can you do the same? Lots of hugs. This condition sucks
I would ask to see another GP and get a second opinion or go to the hospital. The fatigue and hair loss could be down to vitamin deficiencies so ask for blood tests to be done. In particular, it is worth checking your iron levels, ferritin (iron stores) and vitamin b12. You will need to specify that you want a vitamin b12 test done with your doctor as they will not automatically add it. You will also likely need to explain why you think you need the test. So reiterate that you are very fatigued and losing hair and understand that these symptoms can be caused by either iron/ferritin or vitamin b 12 deficiency. And yes, you need your thyroid and kidney function checked too.
If everything comes back clear then I would look into the possibility of what is known as a Candida infection (too much yeast in the body). I also had cold and hot flushes with Candida and so many other strange symptoms. I went on an anti candida diet for several years. Not too strict to mess with your metabolism, but enough to cut out all added sugar and a few other things. It did me the world of good.
I hope some of this helps you. And hope you'll be feeling better soon. X
this sounds so similar to me, I have severe Endo too and get exactly same symptoms and problems with the GP. Leaves you feeling incredibly alone and unsupported.
Do you still have an Endo consultant? I’ve found the best way is to contact their secretary using contact details on their letter head.
Even if you haven’t seen them for a while, as I hadn’t either after my last surgery but after sending an email I was then given an appointment.
Last mri showed ‘pelvic lymph node moderate enlargement and multiple deposits, urgent escalation and mdt required’
I’m wondering if the lymph node involvement is what is causing my temp to fluctuate constantly.
Sadly I got so sick of chasing hospital to escalate further, im having to scrape money together to pay for an initial consultation of £250 with a decent Endo specialist (my old one left nhs and country).
Honestly the experience makes such a difference, so efficient!
I’ve done it this route before, after the initial consultation all treatment thereafter can be done on the NHS, it can fast track a lot of these too. I’d recommend this route if you can. We shouldn’t have to but it’s only way to be listened to.
The fatigue is absolutely awful and in many ways worse than the pain as there’s nothing that can control it.
I strongly believe the fatigue is at its worst when new deposits are developing. Also the frequent internal bleeding inside and our bodies constantly using it’s energy trying to fight it.
It’s terrible that no recognition amongst doctors of the fatigue and pain this devastating disease causes. I’ve recently had to stop working after 18 years of struggling through full time
Best wishes to you, feel free to message me anytime. Xxx
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