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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

To think this can’t be normal?

21 replies

WoesFromAuntFlo · 01/10/2019 16:08

It seems as though issues with my totm are getting worse and worse as I get older (now 30) to the point where I can’t actually function properly for 3-4 days out of a month and have had to take time off work.

My doctor has told me that these symptoms are all normal (although no explanation for why they’re getting worse):

Unbearable pain but no bleeding for 1-2 days. It’s real eye watering pain and feels like my period is here, but it’s not.
Also seems to affect my bowels/be affected by my bowels. If my bowels are full then the pain is worse.
Then comes day 1 which completely wipes me out. The pain makes me feel sick (and I have been sick a few times because of it) it’s that bad. I end up having to go lie down and then can’t physically wake up for 5-6 hours. I get delirious, feverish and so so tired.
The next few days I feel like I have the flu; really tired, feverish, extremely dizzy when I stand up.

I’ve been tested for anemia, not that. I also had an operation to remove a Fallopian tube after an ectopic, but they’re adamant that’s nothing to do with it either. I’m at a loss, I feel like it’s ruling my life (and I can’t keep explaining to work that I seem to have the flu once a month).

Any ideas what it could be? Is it normal? Should I ask the doctors to check for something else?

OP posts:

AllFourOfThem · 01/10/2019 16:09

As for a gynae referral.

AlunWynsKnee · 01/10/2019 16:13

It's not normal, it really isn't. In my 40s my periods became so heavy, I was housebound for a couple of days each month. I was referred to gynae who scanned me, tested my iron levels and had me in for an ablation with no argument. I had no pain either.
Push for a referral because it sounds miserable for you

Drum2018 · 01/10/2019 16:14

Of course it's not normal. Your doctor is a dick for fobbing you off. I agree, ask for a referral to a gynaecologist. You should be having an ultrasound scan at the very least.

Original poster

WoesFromAuntFlo · 01/10/2019 16:18

Sorry should’ve said, I went to a gynaecologist who gave me a prescription for the pill and sent me away. It took 10 months from first doctors appointment (and one every couple of months just to chase) to get to that point too. I feel at such a loss!

OP posts:

Hannah021 · 01/10/2019 16:21

hmm what's normal about that? my friend used to get it really bad, but for a day only.

I think you need to see a gynae and be honest with your HR, say I have this pain, and I want to see my GP about it, and here is a letter from my GP where they've offered me nothing to help!

sebashocked · 01/10/2019 16:22

Not normal. Have you been investigated for endometriosis? Don't let them fob you off.

pepsirolla · 01/10/2019 16:23

Could be endometriosis or benign fibroids as friend had but I'm not medically qualified. Is there a more sympathetic doctor at your practice? Why are so many doctors (usually older male) so unsympathetic to what they see as " women's problem's' !! Demand that you are referred and there is no shame in being honest at work and saying you are having gynaecological problems

NearlyGranny · 01/10/2019 16:28

Sounds like endometriosis to me. I used to pass out from the pain. It took ages to diagnose because nothing shows on X-ray.

Keep beating a path to your GP's door and don't be put off by 'pp is normal'.

Endometriosis can involve the bowel and it can be quite dangerous when it does. A laparoscopy will show what's going on, and the sooner the better by the sound of it!

Hidingtonothing · 01/10/2019 17:18

I would be suspecting endometriosis too OP, I'm currently being investigated for it as well. I see a different GP every time (not by choice!) so progress is slow and it's frustrating how persistent you have to be but it does seem to be what you have to do to get gynae issues taken seriously. And it is serious, it's having a detrimental effect on your life and you have every right to be listened to.

Some GP's are better than others at my surgery but I'm afraid they all get the same approach from me, I won't be fobbed off and if they can't help me I expect to be referred to someone who can. Go back, ask why you're not being investigated for endometriosis (which doesn't show up on a scan) when your symptoms suggest it's a strong possibility and your quality of life is being affected.

And I'm afraid you have to adopt the same attitude with the gynaecologist, keep asking for further tests if they find nothing initially and refuse to be fobbed off. Don't be afraid to ask how exactly they expect you to manage, remain employed etc when you're so severely affected you're out of action for several days every month. It's not pleasant having to be so hard faced and pushy (it certainly doesn't come naturally to me) but the alternative is to carry on as we are and that's not really a viable option

RandomMess · 01/10/2019 17:27

Not normal insist on a referral 😳

Cariad82 · 01/10/2019 17:35

Sounds like endometriosis to me - especially the bowel symptoms. You need a gynae referral and then a laparoscopy to see if that's the case. You may have to really push for it. I was fobbed off so many times before getting my diagnosis

Itsallpetetong · 01/10/2019 17:46

My doctor has told me that these symptoms are all normal

Is your dr male? Go and see a different dr and firmly ask for a gynae referral. Regardless what they feel is ‘normal’, you don’t actually have to suffer just because you are a woman and women have periods.

Took me a decade to get a referral. I had fibroids and endometriosis.

Original poster

WoesFromAuntFlo · 01/10/2019 18:11

Thank you everyone. I think I’m going to write down EVERYTHING (I’ve been keeping a diary of the symptoms) and just plonk it on my doctors desk. I’m so tired of it all!

OP posts:

incognito76 · 01/10/2019 18:12

Sounds very like endometriosis to me.

Ask for a referral to a gynaecologist.

MrsMozartMkII · 01/10/2019 18:17

As PP, nothing like normal! I used to have pain and be drained and it set off my IBS, but even mine wasn't as bad as yours.

I hope you get answers lass.

NearlyGranny · 02/10/2019 05:47

Endometriosis is a pain! The best 'cure' is pregnancy, to stretch all the adhesions, but the disease makes conception difficult.

I even had one random GP tell me because I was ttc, the pain I experienced was psychological because I was disappointed each month. 🙄

When I got the diagnosis, my own GP was stricken, apologised and was totally onside with everything afterwards.

The pain beforehand is caused by invisible bleeding in odd places where misplaced uterine lining tissue is acting under the influence of hormones. Often it forms ovarian cysts that just keep growing and are intensely painful.

I did actually start to half believe I was going mad...

Original poster

WoesFromAuntFlo · 05/10/2019 21:58

Hey all, so a bit of an update.

I managed to see a consultant gynaecologist on Friday (lucky cancellation) and took her my diary of pain and other symptoms. She said they were all fairly normal and because I had a laproscopy for my ectopic 14 months ago that it couldn’t be anything wrong that would warrant another one... basically saying that despite the pain getting worse since surgery that she thinks it’s unrelated.

Instead, told me to ask my GP to refer me for counselling because she thinks I’ve experienced mental trauma from the surgery and the stress is making my symptoms worse.

I really don’t think that could possibly be causing my pain and other symptoms to be getting progressively worse and worse but there we go. Not sure what to do next really!!

OP posts:

Cariad82 · 06/10/2019 13:11

I'm sorry to hear you've hit a wall with it. It's so frustrating when doctors don't seem interested in trying to get to the bottom of something or don't seem take your instincts about your own body seriously. I think if it were me I would be tempted to pay for a private pelvic MRI. If you really feel it's something physical not mental. In the absence of another lap I think it might be the next best thing, and you shouldn't have a problem getting your GP to write you a private referral if you're paying it yourself instead of the NHS. I had a pelvic MRI (without contrast dye because I'd already had my tubes checked with dye and it wasn't deemed necessary for the MRI). MRI's can pick up endo, adenomyosis, fibroids, cysts etc. I recently had a

Cariad82 · 06/10/2019 13:13

Sorry posted too soon! I was going to say my pelvic MRI cost £350 with Spire. Just worth a thought for you. Other people on here might have some other ideas.

Original poster

WoesFromAuntFlo · 06/10/2019 15:44

That’s a really good idea, for some reason I thought it would be far more expensive than that. Think I’ll try that next, thank you.

OP posts:

Hannah021 · 06/10/2019 21:44

if you can go for for the scan without referral, then I'd do that, the last thing you need is a letter that says "we think it is psychological"...

Once I wanted to go for a second opinion, the letter from the first doctor made the second doctor not even check the area saying "oh this dr is one of the best in the field" !! disgusting.

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