Endo or anxiety?: I have been to the... - Endometriosis UK

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Endo or anxiety?

BRYAS profile image
13 Replies

I have been to the doctors and they told me it is unlikely to be endo but I can’t stop worrying. I do however suffer with health anxiety so can sometimes struggle at distinguishing them both.

I have had lower pelvic pain on and off got a couple of months, I went to the doctors a couple of days ago explained my symptoms and worries about Endo and was told to not worry so much.

However I can’t shift the worry my mind, I keep getting pelvic pain recurring every evening, however it only occurs in the evening when I’m trying to switch off. I haven’t got the pain during the day in which I imagine is because my mind is busy. It usually occurs around bedtime.

Ladies who suffered, Do you think I could suffer with Endo OR do I need to try and get help with my health anxiety?

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BRYAS profile image
BRYAS
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13 Replies
Moon_maiden profile image
Moon_maiden

Did the Doctor make any suggestions what the pain may relate to?

What sort of pain symptoms are you getting

BRYAS profile image
BRYAS in reply to Moon_maiden

Yes, the doctor suspects it’s ovulation pain as that’s when I get the ache. And the only symptom I get in a dull ache in my left pelvic area occasionally

Moon_maiden profile image
Moon_maiden in reply to BRYAS

Have they suggested treatment or referral to gynaecologist anyway?

I spent a lot of time last year going back and forth for same symptoms before getting diagnosis. If you are getting pain you need to establish what it is, you know your body.

Endometriosis doesn’t always cause a lot of pain from what so gather, but there are many other things, including hormone balance. Have you had a blood test for levels? Bit hit and miss depending on time of month though.

Good luck, hope you get it sorted

BRYAS profile image
BRYAS in reply to Moon_maiden

They preferred me to have another ultrasound however I had one and it came back healthy. I’ve got blood test results back today which all came back normal. So it’s really just a mystery. Since you mention hormone inbalance, I have only been experiencing the symptoms since going on the implant. Possibly that may have some sort of affect?

Moon_maiden profile image
Moon_maiden in reply to BRYAS

Could be a link, something to bring up to check on. I don’t know much about them, it’s not something I’ve used.

Did the bloods include hormones?

BRYAS profile image
BRYAS in reply to Moon_maiden

I’m not sure what the blood included exactly, she just said a blood MOT 😂 so I presume they did

Char411 profile image
Char411

This is exactly how mine started with mild but persistent lower pelvic pain, and then escalated symptom wise.

I too suffer health anxiety, which is very common in women with Endometriosis.

I kept pushing doctors, even gynecologists as I just knew I had it. Had surgery in 2018 which confirmed it.

Also get help for your anxiety, I’ve only just got help for mine after 3 years of struggling with it.

Best wishes xx

BRYAS profile image
BRYAS in reply to Char411

Did you suffer with periods and things? Because my periods are normal as far as I’m aware, they’re not particularly painful. Mine isn’t getting worse but it’s just not getting better if that makes sense.

I will be pushy again when I have the next scan

And I will have to have help with the anxiety as I’ve lost count at the amount of sleepiness night I’ve had over thinking somethings wrong with me.

Thank you, I hope your getting the help you need with your endo xx

Char411 profile image
Char411 in reply to Char411

My periods had actually got lighter and less painful when my pelvic pain started due to being on the pill.

Despite the health anxiety, remember you know your body best and no harm ever came from getting checked out

As I type this I’m on a train in Latex gloves and a mask due to corona anxiety, it never ends, I have sleepless nights too.

X

BRYAS profile image
BRYAS in reply to Char411

Funny you should mention contraception, I have only been getting the symptoms since going on contraception about a year and a half ago. I’m on the implant.

But thank you for your advice I will definitely go back to the doctor and see what they can do.

Thank you x

lemon_mint profile image
lemon_mint

Hey BRYAS, I don't think anyone in this forum would be able to answer your question as to whether it could be endo as it is incredibly difficult to diagnose. Sometimes even a deep infiltrating endo does not show up on scans (e.g. MRI, Ultrasound) unless they find endometriomas, potential adhesions, etc. But, if your ultrasound came back normal then (presumably) they have ruled out cysts and other things that would typically be visible. Also on the positive side you don't seem to have constant pain. Best thing is to follow your doctor's advice and monitor your symptoms and making sure they do not progress/become worse.

There are a few things however that you can do to tackle health anxiety. I can speak from experience that sometimes one can feel physical symptoms of something we think we have but in reality it is the result of being extremely anxious. At some point I stopped trusting my judgment because some symptoms were so real (I had endo but was concerned I had worse things that that).

You may wish to try and find support for mental health through self-referral on the NHS although (again from experience) it takes a long time to come through.

What I did when I had a huge health scare and horrendous symptoms back in January when I had generalised paresthesia/nerve pain and could not sleep, had no energy to walk or do anything - I had to take 2 weeks off work. What I did in those 2 weeks:

- 40 mins breathing exercises in the morning (pranayama),

- easy tai chi (if pensioners can do it I felt I could too): vimeo.com/6948511 <-- it really helped me with breathing properly and with anxiety as a result.

- set an alarm to buzz every hour and do a 1-min meditation (just closing my eyes, and breathing deeply - the moment I would start getting random thoughts I would get back to observing my breathing) <-- this can be done on transport, in the office, etc. and the more often it is done, the easier it is to get "distracted" from running thoughts.

- for times when I felt extremely anxious and my mind kept running I did this meditation technique (which I was not and still am not enjoying due to it being so "intense" but the sense of lightness and ease I felt after was totally worth it oshoworld.com/newsletter/au...

- bought CBD oil to help with pain and being able to sleep (I was prescribed antidepressants for nerve pain but decided not to take them due to the side effects after reading the note accompanying the medication - that was my personal choice and I am not advocating not taking medicines)

- took a bath with Epsom or Dead Sea salt every other day - it offered a tremendous relief from pain for the duration of the bath and then was easier to fall asleep

- walked for at least 15 mins twice a day.

- I was also recommended a book called The Worry Cure: Stop Worrying and Start Living

by Robert L. Leahy which I ordered and now reading.

After 2 weeks my symptoms eased and I was able to get back to normal. I still do meditation regularly otherwise I start worrying about things too much again.

I hope you find at least some of the things I mentioned helpful for you.

Look after yourself and keep well!

BRYAS profile image
BRYAS in reply to lemon_mint

Thank you so much for this advice. I definitely have a bad habit of fabricating symptoms in my mind to The point where I am convinced they are real. The point where I am convinced they are real. I am in the process of waiting for help with this as I have been convinced on multiple occasions that I have life-threatening illnesses, to the point where I’ve been to A&E because of indigestion.

I will definitely take your advice and trust my doctor, at the end of the day I have highlighted to them that I was worried about Endo, and they (as a medical professional) told me it was extremely unlikely.

As you said I think I’ve tried to refrain from forums like this As you said I think I’ve tried to refrain from forums like this, as well they can help majorly, most of the time they just fuel my anxiety.

Thank you for the tips about the meditation, I am currently in isolation due to coronavirus so it will give me lots of time to practice😂 thanks again!

lemon_mint profile image
lemon_mint

Oh, and stopping reading forums and medical articles online for a while also helps :) I was reading radiologist reports and medical journals with graphic images of surgeries, etc - it did not help things too much :)))))

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