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Period symptoms no one talks about

464 replies

TammySwansonTwo · 05/06/2018 19:16

Day 1 of my period today which is always horrific (double whammy of endometriosis and adenomyosis) and was just thinking about how many weird symptoms I think of as normal, because no one ever talks about them.

The main ones for me are javelin arse and the feeling that my vulva has run a marathon. Oh, and the fact that I had no idea periods were supposed to be red until after my first surgery - I thought I was bleeding to death.

So much isn’t talked about that many women put up with awful stuff for years, and illnesses like endometriosis take years to diagnose. I think we should talk about it more!

What are other people’s weird period symptoms that they believe(d) are normal / universal?

OP posts:
Graphista · 07/06/2018 14:45

I've just put a request in site stuff for a gynae section.

If you think it's a good idea I'd appreciate the support.

Graphista · 07/06/2018 14:39

Thanks for the thyroid issue tips op. My relatives has hyperthyroidism which went undiagnosed (and therefore untreated) for several years. One was even prescribed the medication for hypothyroidism in error.

"For many women, the best they get is stronger pain relief and / or the pill. It’s not good enough." That's the only treatment I had for 14 years.

Bananafish so sorry you've been through all that.

"It should be required reading for all GPs for starters." Amen to that! What IS going wrong with GP training/practice that it's so hard to get referral to specialists (when it's necessary)?

"but in reality is just that those teenagers have no frame of reference and no idea what they’re going through is abnormal" that's what happened with me. Pre-Internet days. Mum not the most approachable, all I had was 'problem pages' in teen magazines that said some girls periods were heavier than others and some unluckily had more pain too (in hindsight I wonder if the girls writing in were undiagnosed too). It wasn't until during mocks I fainted, was taken home, slept for over 20 hours. Mum took me to Drs next day. Until then nobody had asked me to describe the amount of bleeding or pain. And I didn't know what a migraine was. I was getting through a high absorbency tampon AND towel every hour for as I said up to 2 weeks. Mum and dr clearly shocked and both said that's way beyond normal. Yet was I referred to a gynae? No - I was put on the pill (which did greatly reduce the amount of bleeding and length of period and all but eliminated the migraines, so I was grateful!). But that was not the end of it (full story on my gynae diagnosis thread sorry Cba writing it all again). Long story short I was diagnosed at 28 after 2nd mc - purely coincidental as the mc was complex and required surgery it was during THAT surgery the endo was spotted.

Flooffloof - that's shocking (op too). Women are being done a GREAT disservice mainly by gp's who are the gatekeepers to specialist referral and therefore dx and treatment.

ItsalmostSummer · 07/06/2018 14:26

I mentioned my symptoms earlier and yes OP I have teen girls with similar patterns of heavy periods and clotting. One now has the pill to ease it, and the other is a little bit young for the pill. I do not like having to resort to the pill for this issue but the days off school and agonizing periods will do that.
Actually I think what we need are GPS who have been taught well about the women’s system. It cannot be a small section of study if you study medicine. I think all GPs should be trained in delivering babies and be made to do this at the beginning of their careers, so they truly understand how women work. This has to be a big part of their training. Women make up half the population. Women provide all the additional population (ie babies).
Most doctors do not know the difference between a typical period and abnormal bleeding (that most of us here get). There is a huge difference. We cannot keep being ignored in this matter.

PumpingIron · 07/06/2018 14:22

This is an amazing thread.

I get really constipated for 3 days before it starts, and have irrational anger and/or distress, eg. I have horrible thoughts that I made a huge mistake marrying my husband (who I love and adore on most of the other 21-25 days of the months...). Then on the day it starts, I do a mahoosive poo and have cotton wool legs. Sometimes night sweats, (this started in my late 30s). Headaches, exhaustion, low blood pressure due to heaviness of bleeding.

It wasn't until I was about 35 that I fully recognised that all these symptoms were part of my cycle. Even though I know it happens almost every month, I still think "Bloody hell, why am I feeling so miserable/constipated/weak/hormonal?" before I realise this is not a new permanent state of affairs, it is bloody PMS!

The joys of female hormones....

karyatide · 07/06/2018 14:11

This reply has been deleted

Message withdrawn at poster's request.

Flooffloof · 07/06/2018 14:10

I was diagnosed with ME and everything was put down to that. When
I had too many symptoms that didn’t fit they told me I also have
fibro and now everything is put down to that.

This seems too common as well.
From the day I was diagnosed menopausal, everything I have now is down to that. Whatever it may be, it's always related back to menopause. Seems like I can't simply get sick any more. I have given up seeing my Dr now til am through with menopause.
The medical profession really dislike women eh.

TammySwansonTwo · 07/06/2018 13:23

Absolutely agree.
10% of women have endometriosis (similar numbers of sufferers to diabetes and yet it gets a fraction of the research funding)

5-10% of women have PCOS

Shockingly 80% of women have fibroids by age 50

Male contraceptive trials were halted because of “intolerable side effects”

It is unacceptable what we are expected to endure while working, raising children, being carers etc.

I believe all girls in the U.K. have the “period lesson” at school. Why is there not more focus in this class on what’s normal and what isn’t, on symptoms etc?

Most gynaes will tell you that teenage girls don’t get endometriosis and it mainly affects women over 30 but in reality is just that those teenagers have no frame of reference and no idea what they’re going through is abnormal. By the time they’ve fought for a gynae, dismissed because of multiple clear scans and eventually got to the point of a laparoscopy, no wonder they’re mostly over 30. I was lucky to be diagnosed at 22 but my symptoms started three days before my first period - I was having an ultrasound for suspected appendicitis on the day of my first period. When my period started, they said “oh great. That explains the crippling pain!” and that was that. Makes me really angry.

OP posts:
IamXXHearMeRoar · 07/06/2018 13:12

Classics is good but I second the need for a Gynae topic in health, why isn't there one or have I missed it all this time?

All the money and research that has gone into erectile disfunction and we still expect women to just get on with it. This thread has been an eye opener and I think every mother needs to have their teenage daughters read this and understand more than I did.

TammySwansonTwo · 07/06/2018 13:06

So glad this has been moved to classics - hopefully everyone’s stories will help lots of women. It’s scary how many women have symptoms that they didn’t know were common, or potentially symptoms of a gynae problem.

Please push to see a gynaecologist if your periods are awful, it’s sad that we need to but it seems nothing has changed since I was diagnosed nearly 15 years ago - if anything I think it might be worse.

OP posts:
TammySwansonTwo · 07/06/2018 13:03

My vitamin D is in the toilet too but not improving because my GP has given me a paltry dose rather than a loading dose, which is what I need.

I get tailbone pain too but throughout the month - it’s painful when sitting but when I stand up the pain explodes for a few seconds. Still don’t know why and I’ve had this for ten years! I was diagnosed with ME and everything was put down to that. When I had too many symptoms that didn’t fit they told me I also have fibro and now everything is put down to that.

My mum died from stomach and ovarian cancer that was dismissed as IBS for a long time (even though women over 40 generally do not get new onset IBS). I’d strongly recommend every woman familiarises themselves with the symptoms of ovarian and uterine cancer since they’re often ignored until they’re advanced.

OP posts:
IamXXHearMeRoar · 07/06/2018 12:51

I get specific points of pain which every time convince me I am getting appendicitis for a day or two then it moves around to my tail bone and pelvis. Sore bones. Learning on here about the nerve placement has helped that make sense.

My last smear showed a polyp which was considered a possible reason for the extremely heavy bleeds I was having. It was removed quickly, straightforward procedure, lovely and kind Gynae. The bleeding has reduced during my periods now. I wish it had been found sooner.

Gynae also took time to talk through other symptoms and pointed me to vit D deficiency, (all tiredness sypmtoms and screening not getting anywhere with GP). She was right, my vit d levels were very low and supplements are helping.

I also take complete multivit with iron/zinc/magnesium etc and evening primrose oil and cod liver oil. During my period I take the multivit twice so morning and night - it helps with the anaemia. I notice a difference when I don't take these supplements.

Dragonlight · 07/06/2018 12:18

Thank you MN for moving this to Classics!

I thought of another too. I suffer from prolapse and symptoms are a thousand times worse during my period. Does anyone else notice this?

RocketPockets · 07/06/2018 12:03

So many of these!! Javelin arse (never had a word to describe it but that's perfect!)
D&V, nausea, restlessness, hot sweats, anger, obviously pain, achy legs & back, migraines. I started running and that definitely helps my mood in the run up to my period, I notice I ache and find running the week before & sometimes during my period a lot more effort and my knee hurts but not other times.

AnyaMumsnet · 07/06/2018 11:53

Hi everyone,

Just letting you all know that this thread has received some nominations for Mumsnet Classics, so we're moving it there now.

Dressups · 07/06/2018 11:41

Week before period and I’m currently in bed and feeling very depressed.

I say silly things to people and then overthink them (like I did this morning).

Have a short fuse in general.

Can’t wait to feel a bit better next week 😢

AuntyElle · 07/06/2018 11:11

I am so sorry for all that you have endured, Banana. Flowers
Thank you for this thread, Tammy. It should be required reading for all GPs for starters.

TammySwansonTwo · 07/06/2018 00:17

Oh banana, that’s truly heartbreaking. Despite everything I’ve been through, I would take my experience over yours any day. I can’t imagine how that feels. On the one hand I’m very glad you’ve seen such skilled specialists and has such thorough investigations, and on the other I’m sad to hear that as it’s not going to get better. I wish we could have womb lining swap, although frankly you might want someone with a properly functioning one!

Sending all the Flowers in the world. I hope one day there’s sufficient research into women’s health to understand and treat all these things.

OP posts:
RachelTeeth · 07/06/2018 00:09

Yes to period shits, cramps down my legs, radiating heat, clots etc.
I take the pill without the withdrawal bleed, can’t handle that nonsense anymore.

bananafish81 · 06/06/2018 23:52

Thanks Tammy - my consultant gynae literally wrote the book on endo (he authored one of the major textbooks on endometriosis), he says it's criminal how women are fobbed off by GPs with debilitating periods, and told they're normal. He used to run an endo and fibroids clinic at a major London teaching hospital, and said the number of women with undiagnosed endo who've been suffering for years is abhorrent. He said the amount of women who come to him for fertility investigations and treatment who have never had proper diagnostic, and who he subsequently discovers have endo, is shocking. He said it has to start somewhere, and the earlier it's diagnosed then the sooner it can be treated and the less likely it is to progress to more advanced stages (and less likely to cause fertility issues). He thinks the level of research into fibroids is shocking - women are walking around with tumours in their wombs, and he said we still know so little about why. If it was a male issue he reckons they'd have discovered a cause and cure by now!

(Mine definitely isn't endo - between my gynae and having seen the world's leading researcher into womb lining and infertility, I've been very well investigated. The problem is basically the opposite of endo - instead of the endometrium growing where it's not supposed to, mine doesn't grow where it is supposed to. I've had multiple endometrial biopsies and the lab couldn't even find any usable tissue - not a single endometrial cell in any of the samples. Just mucus. I will never be able to have children and the black periods are emotionally distressing, but I am at least spared the physical trauma described by so many posters here. I'm sorry so many women here have had to endure so much, and been so roundly let down by the medical profession)

Ivebeenthinking · 06/06/2018 23:52

The hot flushes, javelin arse oh and hot sweaty flushes.

TammySwansonTwo · 06/06/2018 23:40

I’m so sorry Bananafish - that’s similar to how my periods were prior to surgery (only thick black sludge) but large quantities of it. I assume they’ve checked you for underlying conditions like endometriosis already? What an awful thing to go through, I’m so sorry Flowers

OP posts:
Couchpotato3 · 06/06/2018 23:33

Among many other things, I notice that I get a lot of achy joints in the few days before my period is due. I've always put it down to water retention.

bananafish81 · 06/06/2018 23:17

I have the opposite problem - my womb lining won't grow and won't shed properly (reason I can't sustain a pregnancy and all our IVF has failed / I've miscarried healthy embryos). Which means the lining breaks down and gets reabsorbed rather than shedding as a menstrual bleed. So I don't get any fresh bleeding, I just get black gunk

We spent 10 months of fertility treatment every month just to try and get me to have periods, to try and get my uterine lining to regenerate. This involved pumping me full of fertility drugs to make me ovulate up to 13 eggs at a time, to try to grow my womb lining, to try and get me to have a period. (Unsuccessfully)

Even when I miscarried, I didn't bleed. Twice. I was desperate to have some kind of period to get rid of the bits of dead pregnancy tissue, but my body couldn't flush it out

I feel dirty and toxic, like my uterus is rotten and a very visceral reminder of the fact that my womb doesn't work

EduCated · 06/06/2018 23:10

Sure I read it on a less dodgy looking website last time, but periods and acid reflux

EduCated · 06/06/2018 23:07

Oh yes, Stripey, I get heartburn too. Thinking about it, it hasn’t been so bad for the pass few months. At one stage I was sleeping propped right up because of it. There’s an explanation of why somewhere, let me find it!