AIBU to ask how common these period symptoms really are?

[Maomee]

I'm currently being investigated for endometriosis following difficulty conceiving, and it's making me question my period symptoms .I know that there is a wide range of 'normal' when it comes to such things, but for years I had been convinced what I experience is fairly common. I know that the condition itself isn't uncommon, and the symptoms don't always correlate to the severity, but rather than endless googling which seems to contradict itself with 'that can be normal' and 'symptoms that stop you doing your regular activities are not normal', I'd rather hear from other women about their experiences instead. From what I've heard from a few friends since I've been questioning this, some of the following isn't that common.

The symptoms I've had for many years would be usually quite heavy periods but the length is quite regular at around 5-6 days. I get the cramps but rather than be concentrated in just the lower abdomen they can be spread right across, almost from hip bone to hip bone if that makes sense. The pain can also, rather than crampy, be more of a continuous burning feeling, sort of like a sunburn on the inside. I can feel this burning in my very lower back too, my coccyx area, as well as my abdomen.

The level of pain actually varies quite a lot month to month. Most months are sort of the same level as a mild to bad headache then I can randomly have a cycle where the pain is a good 6 x as bad and if I'm busy it can really interfere with what I'm doing. It's never totally debilitated me to the point where I have to sit down or anything but I feel like I really would prefer to.

I don't have the other classic endo symptoms such as pain during sex, but I do sometimes have pain when I poo. However, I'm not sure how linked that is to my period as it only happens some months.

I'd just really love to know how common all of this is, after hearing and especially reading such conflicting information.

I have endo and adenomyosis. Some of the pains sound similar to mine.

Like you, pain would fluctuate from month to month, with seemingly no reason. I'd have continuous pain from hip-to hip with some additional stabbing pain thrown in for funsies, but no pain during sex or when going to the loo. I also had regular periods and back pain, which on the worst months would run down my thighs and was debilitating.

I had a laparoscopy and (amongst other places) endo was found on the ligament that attaches the uterus to the base of the spine, so I guess the back pain made sense. When it was removed, my hips felt 'looser' for want of a better word.

There was no endo found on my fallooian tubes, and I conceived without intervention, but it took almost a year. From the ovulation strips I used, I suspect this was due to short cycles and having less time for the eggs to implant after ovulation. Sometimes ovulation was less than a week away from my period. Short cycles can also be a risk factor/symptom of endo.

Even on the months I wasn't incapacitated, I would be absolutely exhausted and 'foggy' in the run up to my period and had to regularly take iron tablets. I'd also get what I've heard described as "period flu", menstrual headaches and nausea. I'd vomit every month without fail in my teens.

My symptoms started when I was about 12, so like you I had no 'normal' to draw from. I knew something was amiss, but doctors never took me seriously as a teen, and because my periods became more manageable as a young adult I thought I was over it. Sadly it got worse again when I started perimenopause, and I realise now that they were never normal even during the years when I was 'functional' for the majority of the time.

Endo is a weird disease, and sometimes feels like it changes from month to month. Keep pushing, even if nothing is found on an ultrasound. It's often not seen on ultrasounds.

Best of luck with your diagnosis and TTC

I don’t have endo or have no reason to believe I do, I get a radiating pain so around my pelvis and into my legs. It’s definitely more of an ache that a burn- it was really uncomfortable pre-children to the point I would have to take pain killers but post children I take pain killers on just day one.

No endo to my knowledge.
Nausea and cramping, which I took medication for because it was distracting as much as anything. Like, a surge of nausea and wave of pain across my abdomen, across what would be covered by a corset- so from around my waist down to the tops of my hips. Everything below the ribs really.

The bigger problem for me was blood loss. Very heavy, fill a moon cup in an hour type. Hard to manage in a practical sense. Coil made it worse- lighter but constant, through the month.

I wasn’t aware that fibroids could cause problems, so with hindsight probably should have looked it up more. But I think we’re rather trained to believe it’s normal and must be endured.

No endo.
History of fibroids but they were removed.
Periods last 5 days.
Not heavy, I use a menstrual cup and empty it once a day.
No cramping or pain at all, it has never affected my ability to do anything physical.
Period symptoms are irritability, spots on chin, tendency for comfort eating, and weight retention.

For me, with no endo:

1. quite heavy periods but the length is quite regular at around 5-6 days - normal
2. cramps that spread right across, almost from hip bone to hip bone if that makes sense. not normal
3. The pain can also, rather than crampy, be more of a continuous burning feeling, sort of like a sunburn on the inside. not normal
4. I can feel this burning in my very lower back too, my coccyx area, as well as my abdomen. normal
5. The level of pain actually varies quite a lot month to month. normal
6. Most months are sort of the same level as a mild to bad headache then I can randomly have a cycle where the pain is a good 6 x as bad and if I'm busy it can really interfere with what I'm doing. normal

I have endo and I've had it removed twice. First time my symptoms were painful sex, after the first removal I haven't had that again but I suffer some months with awful pain in my bum around ovulation, I can't sit down, its awful, but it only lasts about an hour. I had it removed again to conceive and the endo was all over the place again. What im saying is that even in the same person endo symptoms can vary considerably and its really based on where the endo is. Mine was in slightly different places the second time and very concentrated around one tube, hence the occasional ovulation pain when I ovulated that side.

I was diagnosed with PCOS when I was sixteen after i had been bleeding heavily for two months straight. I was rediagnosed in my early thirties, I wasn't offered any treatment. When i came off contraception my periods were still heavy, painful and very irregular, I could have anything from three months to a year between periods. I was told I have endo about a month ago, i know nothing about it and once again wasn't offered any treatment but I am currently having one of the worst periods i have had in a long time. My past few periods have been heavy for a few days then ease off and stop after 8 days. This one is now almost two weeks in and even though easing a little it is still heavy and the pain is terrible, very crampy and sometimes stretches across my abdomen and into my back. I don't experience pain during sex or when I go to the loo. I hope it stops by the weekend cos we are spending one night at a hotel with an indoor pool and it would lovely to have a swim.

I have stage 4 endo. My surgeon told me that painful periods are normalised but not normal and anything that needs more than some paracetamol and a hot bath should be looked at

my pain went down my thighs, hurt to poo, shooting bum pain and then eventually I started getting random pain flares not linked to my period where I was on all fours screaming, that’s when they operated

Thanks so much for your detailed reply. Sorry to hear about your struggles with endometriosis but pleased to hear it didn't affect your fertility and you were able to get diagnosed also.

It sounds like you had your surgery before TTC, is that right? I know for some women, even if it isn't on the ovaries or tubes directly it can still affect fertility via general inflammation. Although some seem to be able to conceive OK despite having it in those areas too.

I actually don't remember my periods being bad when they first started when I was 12. I think the pain must have been very minor then but I remember first experiencing the occasionally very painful ones from when I was about 16 onwards.

I have a gynaecologist appointment next week which I've been waiting for for months. I'm hoping it won't be too much longer to wait from there for answers, I think overall I'm more concerned about my fertility than the symptoms, but I've started to add everything together and becoming worried that TTC won't be as easy as I'd hoped. Now, when I have a period, I feel really anxious that I might have this problem and that it may be getting even worse over time. I'll admit I am a bit of a worrier, but after TTC with no success at all for almost a year it really feels like I have a reason to worry.

I'm glad your pain improved post children..I have heard for many, periods can become less painful after giving birth. It's interesting that you note you aren't aware of any endometriosis, as indeed many women may think they don't have it but could well just have it without it affecting fertility or being too unmanageable..I guess that's part of what makes it so difficult to untangle normal pain from pain due to th se kind of conditions..

I must admit I haven't heard of nausea being a common period symptom. I know that my friends and I usually want to eat even more during our periods so it's kind of the opposite. Did you get diagnosed with fibroids?

I do actually have one known fibroid, but with it being small and on the outer part of my uterus they don't think it's likely to be impacting fertility at this point. Although it could explain the heavy bleeding, I guess they'll note it at my upcoming appointment.

I think I speak for a lot of us when I say it's difficult to imagine a period with no pain! I'm sorry to hear about your fibroids though, did you find the recovery from surgery manageable?

Thanks for taking the time to address each symptom and give your own insight on each. It seems that the type of pain and widespread area of it may be unusual and point to more than just 'nornal' period symptoms.
I wish there was more known about this .because I really thought it was normal to feel pain in a huge area. When I've asked some of my friends, they say they only get cramping in a very localised area in the lower abdomen, most of them don't even have any lower back pain at all.

It is incredible to see how much this condition varies from person to person and even at different times in the same person like yourself. It's such a chaotic condition. Sorry to hear about your ovulation pain, but it's good that your pain during sex has subsided that must have been really difficult. I hope it stays manageable for you.
If I have it, I strongly feel like it may be on the back of my uterus and bowel, because a lot of my pain is now in my back and it's that very specific burning pain. But my biggest worry is it affecting my tubes and ovaries as I've been trying to conceive for some time with no success.

Sorry to hear about your different conditions and being messed around by the health service. Women's health care is so poor, even these days. Are you going to push for some treatment? I think if it's affecting you this badly they should really do something. Sometimes you have to be quite firm about how much it's impacting you. Hopefully your symptoms ease up before your hotel break I hope you enjoy it..

I'm so sorry, that must have been so scary to have pain that was so intense and also out of your usual period. I'm so glad you got some treatment and hope you continue to feel relief from it.

My period days are long over and when I was an adult there wasn't any talk of endometriosis. Basically, 'have a baby' if you want to get rid of period pain!

My pain was very bad, started on my 2nd period and was constant over my reproductive lifetime (I didn't have kids). Incapacitating on day one with the onset of bad cramps that ebbed and flowed every few minutes. Was bed-bound with painkillers and hot water bottle. Pain was lower front and back and down the front of my thighs, pain in my lower back was the worst area. Day 2 was heaviest flow, usually painful too and needed bed rest some of the time. Still had pain on day 3 and 4 but much less and manageable. My periods were always irregular. Once I was well into adulthood I went on the pill which did help (although still had some pain it was more manageable).

Did I have endo? Don't know, probably not. Menopause was easy and a huge relief to be rid of those horrible periods!

Sorry, I don't think I wrote my timeline very well. I was fortunate enough to conceive and have a healthy pregnancy years before my diagnosis and surgery, but I've heard that it's a bit random. Some women with endo dont have any symptoms and only find out when they're having difficulties concieving.

My diagnosis came when I was 40, and was no longer finding my symptoms manageable. I was lucky/unlucky enough to have an endometrioma (a specific type of ovarian cyst which occurs in the later stages of endo) visible on my first diagnostic ultrasound. I say lucky because it meant I finally had undeniable physical evidence that something wasn't right, and my referral went pretty smoothly after that. The consultant basically just looked over my notes with me and approved the excision surgery I requested straight away. I was expecting more pushback to be honest.

I'm glad you have an appointment next week and hope it gets you some answers. Also make sure that your partner's fertility is also tested before you undergo any painful or invasive procedures so that you know both your starting points and can take any additional actions needed.