Flare up

[jmoss]

Hi ladies looking some advice. Things have been grand for few months usual “manageable” symptoms but I sometimes get really bad unmanageable symptoms. Period finished last week and it was tough one now feeling nauseous, lightheaded, no energy at all, fatigued, discomfort in my back and pelvis and to top it all off bowel really lose and full of wind! Is this a flare up? What is a flare up? Is it linked to stress? Sorry so many questions but feeling very down.... thanks

[Hidden]

I'm not really sure how to answer your question but I am in the same boat. I was told 6 years ago I might have endo but yet to have the laparoscopy to confirm. But I have had all the symptoms. I was put on the pill to control them and like you said, they have been manageable since for about 5 years now it's been in the back of mind but not interfering with my life anymore so that's good! But then more recently my symptoms have slowly made a come back and I don't know why. I'm worrying that if I do have it, what if it is getting worse and my pill doesn't work anymore... I mean is that even a possibility? I feel like I don't really know enough about it because i haven't had a diagnosis and been able to talk to anyone properly. I'd be interested to know what a flare up is too in case I am diagnoses. But diagnosis or not, I have had the symptoms, managed them for a while and now they are back and it's horrible, so I feel your pain xxx

[luthien in reply to Hidden]

The pill or any hormonal treatment will not stop or cure endo, it cannot be stopped or cured. Hormones will delay or slow it down but eventually it will get worse. Symptoms cannot be categorised by severity of endo, some women have lots of endo and some symptoms, some have a little endo and no symptoms, so it's difficult in that respect.

It would be good, and if you feel ready to, see your gp / specialist and have a diagnosis so that you know what you're dealing with and what to do next regarding treatment. It can take months to years depending on the gp for getting that lap so start asking for it sooner.

[Hidden in reply to luthien]

I have been to my GP and currently trying to get them to understand. If you get a chance you can find my post on the page and that will tell you more about me. But basically I've been suspecting endo for about 6 years now and I'm really fed up not knowing anything about it and people not telling me because I'm not actually diagnosed. But then nobody is offering laparoscopy either.... Keep saying there isn't enough for them to justify doing it. Want to rule out other things first which is crazy because I've been ruling stuff out for 6 years!!! I just can't see how all the symptoms of endo and no other explanation isn't enough. We just go round in circles... It's so hard

[luthien in reply to Hidden]

Ahh okay, sorry.

Yeah I feel for you I think it's about persistence and finding a doc that want's to listen to you, it may mean changing doctors.

I know some women on here have suggested BSGE clinics, could you have a look into that? I didn't go via them, I went private so I don't know much.

[luthien]

Have you had a laparoscopy to confirm endo or anything else?Ideally you need that to know what you're dealing with.

For the moment it would be good to record your symptoms on a page a month diary including period and ovulation to find out when endo symptoms are worse. Flare ups are called that usually because the symptoms get worse at certain times / or triggers. You just need to work out what causes it? Sometimes it's all the time, sometimes it's ovulation, sometimes its periods, it can even be certain foods.

[jmoss in reply to luthien]

Thanks for answering ladies. This has been ongoing since my daughter was born 7 years ago! Never had lap but attended gynea team and put on medically induced menopause for 4 months. at review appt consultant says you most likely have endo as endo type symptoms disappeared for most part so he advised straight to hysterectomy 😢 this recent increase in symptoms has gotten me down! I have experienced this before when daughter diagnosed with Asperger so wondering if stress can be trigger ..... x

[luthien in reply to jmoss]

Docs shouldn't go straight for a hysterectomy, specialists whom treat endo wont advise it, it doesn't cure endo or stop it. We are female so we'll always produce hormones that make endo grow, and if it's on other organs it will stay there. Having a hysterectomy will only remove the bits on the uterus and slow it down a little much like hormone treatment. If endo is in large enough adhesions it creates its own hormones to make it grow so sometimes hormone treatment stops working or a hysterectomy will not change it.

Stress is definitely a trigger point for endo symptoms and it is known to make it worse, just because of the way it is. Being calmer isn't easy and quite often that isn't enough to reduce symptoms; the endo won't go down or away on it's own.

You should find a gynae that specialises in endo. Mine specialised in endo, fertility problems, heavy periods, laparoscopy, laparotomy; he's said he would never suggest hormones or hysterectomy for a treatment for suspected endo without a diagnostic lap to see what's happening and whether there's any other problems.

[Hidden in reply to luthien]

That's really interesting, my GP said the opposite. They wouldn't go lap until they have tried everything else. Do you go private as I know that has been the option for a lot of women and the only way they found somebody who would listen x

[luthien in reply to Hidden]

I have medical insurance through work, so went to my gp and said i'd like to be referred to ... (contacted my insurance first as they let me choose whom I want to go with) rather than the nhs gynae dept.

GPs unfortunately aren't informed enough about endo or those sorts of things simply because they have broader training; so they see its as a general cycle problem to treat hence hormones and it means we'll keep coming back. It's best to force a referral as soon as you can; you need to know what's going on inside to plan your future. xx