Is this endometriosis? Why are my cycles so long?

[stopthepain]

My periods have never been normal in the 14 years I’ve had them. I’ve always suffered with super heavy bleeding and excruciating pain so bad that I am bed bound for the first day of my period. I was on the pill for around 4 years and since stopping it (around 14 months ago) my periods are deliberating. I pass out from blood loss and pain and I’m often too weak to move.

Also, my menstrual cycle is around 45 days which is too long. Although sometimes I’ll have a period and then bleed heavily 2 weeks later.

My FSH, LH, androgen, prolactin and thyroid were checked earlier this month to rule out PCOS. All normal. I am young, fit and healthy, and not stressed. I’ve been begging my GP for help for years, but keep being told it’s normal to be in pain and they pressure me to use hormonal contraception (I will never take this again).

I have a feeling this could be endometriosis, but I feel like I’m being gas lighted. I’m worried about my future fertility because I don’t have a regular menstrual cycle that’s 28-35 days.

Have you tried anything to regulate your cycle? What hoops did you jump through to get a diagnosis? Could this be endometriosis? Thank you for reading.

It does sound like endometriosis you need to push push push the GP for a referral.

Some women do have long cycles, mine were 5-6 weeks until I had my DC and then ended up every 3 weeks 🤦🏼‍♀️

@RandomMess

It does sound like endometriosis you need to push push push the GP for a referral.

Some women do have long cycles, mine were 5-6 weeks until I had my DC and then ended up every 3 weeks 🤦🏼‍♀️

It’s so exhausting because GPs aren’t taking me seriously. If you don’t mind me asking, how did you fall pregnant when you only had a period every 5-6 weeks? I was told by my GP that I would struggle.

🤣

I don't have endometriosis (my eldest does and it's horrific for her)

I am VERY fertile!! Eldest conceived after failed condom and taking the morning after pill. Next one I was coming of Depovara injections, next one first month we tried, last one took 2 cycles. No miscarriages or stillbirths which is pretty unusual for 4 DC.

Passing out in pain with your period and bleeding between periods is not normal, insist on a referral.

I've always had long, erratic cycles (sometimes I'd go three months without one!) and v painful although not heavy periods. Weirdly, having DD totally fixed them. They became totally regular and painless. My mum was exactly the same! Hoping DD2 doesn't ruin them again when she arrives

Definitely worth seeking some help to rule things out.

I have endometriosis, always had very regular periods, I bleed for about 10-14 days, but my cycle length is pretty much always 28 days, I’ve not heard of endometriosis causing irregular periods before (not saying it can’t, but I’ve just never heard of it as a symptom).

I've always had horrific periods. Pre kids they were so heavy and painful. Post kids they're another level of heavy.

First - push for proper investigation. Refuse all hormones and make they see what's going on.

Second - long cycles don't mean that you're not regular or that there's anything wrong. If your cycles are 45 days long 9 out of 10 months then that's fine. That's normal for you and likely you just have a long follicular phase. Length of cycle alone won't impact fertility.

Third - get a copy of the period repair manual. Changed my life and I will be re reading again when my DD gets to her teens. This book can talk you through supplements to help your problem, but also has loads of information to help you speak to doctors to get help.

Long term for me, I'm having an ablation done soon with the hope that it will lighten my periods a bit. My pain is manageable now but the amount is just scary. I'm day 1 today and have been home all day exhausted, DH has had the kids, I napped and I'm sat on a blanket in case I have an accident on our new sofas. Hopefully this will be my last ever period like this.

@Twizbe I had ablation as mine were ridiculously heavy and then every 3rd week so I was constantly anaemic. Utterly life changing!

Look up Adenomyosis and see if it could be that causing the heavy bleeding/pain.

If you think so, go and see your GP as it’s a curable condition.

Thankfully mine showed up on a scan so I had a hysterectomy and am now cured- but reading what your going through reminds me so much of what I went through

Thank you everyone for your comments. This makes me feel less alone. @Hugasauras it’s great that pregnancy has improved your condition! @Twizbe thank you for your reassurance. I will have a look at that book! @Dottychickens I will have a look into endometriosis vs adenomyosis. Hysterectomy and ablation are not an option for me. It’s shocking that there isn’t a cure

I’ve also just realised I wrote deliberating instead of debilitating.

There is treatment for endometriosis but it seems you need to demand demand demand push push push to get to a gynaecologist and then down to get one to do something.

It is very debilitating, my eldest is considering hysterectomy in her mid twenties as she doesn't intend to have DC and after 10 years she's just had enough.

This sounds like it could be endometriosis. I had severe pain from a young age (14), long irregular cycles and heavy bleeding.
I was diagnosed with stage 4 endometriosis after a long battle to be taken seriously (25 years!!) and it was everywhere (bowel fused to uterus, bowel, bladder, ureters, uterosacral ligaments, side walls, even diaphragm!) also diagnosed adenomyosis and PCOS. I had severe pain with a bowel movement and constant UTi symptoms, and was incapacitated with the bleeding and pain.
I had excision surgery which removes the endometriosis and is the gold standard treatment. Before that I had some ablation which didn’t solve the issue. I left my uterus so still have trouble with the adenomyosis but all endo has gone although my surgeon warned me it may come back. If you suspect bowel and bladder involvement then you must be referred to a BSGE surgeon under NiCE guidelines. Check out Nancy’s nook on Facebook.
Another consultant I saw for bladder problems said that gluten free is the way to go with endometriosis as it reduces inflammation in the body. Just in case useful.

Best of luck- you will need to fight to be taken seriously. Make sure you draw attention to the big impact on your quality of life with the pain and bleeding.

Passing out from blood loss and pain NOT normal at all! Your GP is being ridiculous!

Can you see a different GP at your current practice? Can you afford to see a gynae privately? If neither of the above, I'd change GP's because your current one sounds negligent! You need proper investigations to see what is causing this debilitating pain and symptoms. Best of luck op

Look about the NICE guidance on referral to gynaecologist and insist your GP refers you.

I would change GP practice, this one you’re going to sounds awful. It’s no point in trying to communicate with people who are not listening.

I would concur with the need for a referral to a gynae and preferably one at a BSGE centre.

A 45 day cycle is too long and is often indicative of problems with ovulation, PCOS cannot be ruled out here and as you rightly state a normal cycle is between 21 and 35 days (or with less than 4 days of variation from month to month). In the meantime I would keep a daily pain and symptom diary noting pain on a scale from 1-10. It is quite possible to have both PCOS and endometriosis at the same time, both can exist quite happily together.

What cycle days were your hormone levels measured on, I ask only as if these are taken on the wrong cycle day the result can be meaningless.
And do not accept normal, your 45 day cycle shows otherwise.

You will need to be persistent in order to get answers.

@AttilaTheMeerkat thank you for replying. It’s so frustrating and I feel like I’m not being taken seriously. I track my symptoms on my period app. My FSH, LH, androgen and thyroid blood tests were taken day 16 of my cycle. The FSH and LH weren’t similar numbers, but still within normal range.

I’m 25 and as a pre teen/teen I was told “oh just wait until you’re an adult” and now it’s “oh it’s been 14 months since you’ve been off the pill so it’ll take a while. Why don’t you go back on it?”

I think I ovulated day 30 of my cycle going off my bbt and egg white texture of my cervical mucus (started charting this month). This means I ovulate late. I’m now day 45 and no period, but I’ve had awful bloating, painful cramps and fatigue the past week or so. I seriously need help :(

I would certainly re register with another GP practice and besides which such issues are well outside a GPs general remit in any case.

Your LH and FSH levels were measured too late in the cycle. Those two need to be measured AND compared against each other on day 2 for a "day 2 blood test".

www.btf-thyroid.org/thyroid-function-tests is a good link re thyroid tests.

I would refrain from both temp charting and checking mucus as with irregular cycles such methods are unreliable. Blood tests (a day 21 test) are far more reliable an indicator.

@AttilaTheMeerkat Your LH and FSH levels were measured too late in the cycle. Those two need to be measured AND compared against each other on day 2 for a "day 2 blood test".

I think GPs need to attend your lectures because you know so much more than they do! No one mentioned about having blood tests done at certain points in my cycle. My FSH was 8.9iu/L and LH was 3.4iu/L. The ratio seems a bit off.

I think my GP (it’s a different one within the surgery) is finally (kind of) taking me seriously. I have a transvaginal ultrasound next week so I guess I’ll have to wait and see.

This is knowledge gained through direct experience. This sort of issue also is well outside a GPS remit.

A transvaginal ultrasound will not detect endometriosis if it is present. I have had more of these than I care to mention and none of them showed the endometriosis present within my uterine cavity. The endo deposits are very small. It may be useful however, to see if your ovaries are polycystic.

You need a gynae referral, do not take no for an answer here.

@Namechange600 great advice as a fellow 25 years plus endometriosis sufferer who also had excision surgery it's a relief to read.

OP the biggest issue with endometriosis is it doesn't show on scans, so the NHS always you down the line of scans, I had an MRI thats showed nothing but I knew I had it so booked private surgery and had it removed.

Other than the heavy and painful periods do you get other symptoms? UTI bladder pressure, painful sex, painful orgasm, ripping, tearing and burning pain in your tummy area even when not cramping? Any bloating, IBS symptoms.

I just would potentially look towards the adenomyosis route, its hand in hand with endometriosis but sounds like the pain is focused around your uterus and the contractions monthly.

Also sorry if you said but how old are you? I'm going to assume its not peri menopause?

It might be worth a Dutch test to see if your hormone levels are out of whack.

Sorry I can't help any more than other posters other then to say you have my sympathy, I'm trying this from the bath crippled with cramps trying to face a work day tomorrow.

@applecrumbleforteaagain I am bloated and in pain at different points in the month, not just during my period. Sometimes it seems to happen randomly. I’ll have a sharp pain that takes my breath away and brings tears to my eyes. I can't move. This is awful when I’m at work. However, it’s even worse during my period. I am 25. I’m sorry you’re in pain too :(

@AttilaTheMeerkat thank you so much for your advice and support. Really helpful. How do they diagnose endo if an ultrasound isn’t sufficient? I’m going to ask for a gynaecologist referral and not take no for an answer. I’m terrified and anxious about my next period.

@Namechange600 thank you for sharing your story. That is so horrific and Your symptoms sound similar to mine. The treatment sounds so scary. Disgusting that it took 25 years of you fighting before doctors listened :(

The only conclusive way to diagnose endo is a laparoscopy and under the NHS they will prescribe you every medicine to combat the symptoms of endo and prescription pain killers plus other meds to counteract the meds they have already given you.

Combined pill is usually step 1. As Attila has said it basically becomes your responsibility to find out as much as possible about your condition rather than relying on GPs. It is completely shit.

You need a referral. Passing out or being exhausted from periods is not bloody normal. For years I was fobbed off with either most women have periods and they seem to cope, or you must have a low pain threshold, or recognising I was in freaking agony and well you just have painful periods. I saw a female GP and finally after over 10 years of issues she said I think it might be endo, let's refer you to a consultant.

A website I found incredibly helpful over the years www.endometriosis-uk.org/

So you can see if any of that applies to you. Keep a pain/exhaustion diary so you will go in armed with information. I went through all the meds, combined pill, progesterone, GnRh analogues for 6 months (chemical menopause plus HRT at the ripe old age of 27) I refused to take any Testosterone and finally when my private health care kicked in, laser lap and dye for confirmation of endo and to treat any deposits. My endo was described as "aggressive" and now that I have experienced labour pain I can tell you hand on heart that endo is just as painful.

I was diagnosed 20 years ago, I read everything I could on it to be as informed as possible, hence why I refused the sometimes irreversible Danazol (Testosterone) meds. Good luck and read up on the NICE guidance to get a referral so you can go in prepared.

Hi @stopthepain to diagnose endometriosis you need an operation called a laparoscopy. They open you up at your belly button and make a few small incisions to look inside and find endometriosis. This is where you want a very good endometriosis specialist abs not a general gynaecologist as they know what to look for. Ideally you want the excision done then and there but some surgeons can hold back if it shows eg bowel involvement as that can be a bigger op and they’d rather do that separately. However i did find a surgeon who would prepare and act on every eventuality to remove all signs of endo- would definitely recommend this approach.

However, endometriosis if very severe can show on an MRI. As an example mine did and showed anatomical distortions and bands of fibrosis. This can be useful as if it looks like there is bowel involvement this can be planned for in the surgery.

I ended up going private sadly. I was told for the millionth time to get a mirena coil and I was basically housebound with pain and so I couldn’t take it anymore.

As person upthread said you basically need to read as much as possible and present your case to GP. Your symptoms are not normal and it is negligent to suggest that they are.

I also have a condition called interstitial cystitis which causes major bladder issues too. (And a number of other conditions too which have been intertwined with my endo and adeno over the years).

@applecrumbleforteaagain waving at fellow long haul sufferer!! It’s such a shit condition isn’t it 😩😩

Hello Dr. Jolene—I have had two uterine polyps removed with the difference of six months. My period is always heavy & aggressive. Last month I had heavy bleeding, a week early before the period & kept bleeding for two weeks. I did a trans vaginal exam & nothing showed (however, none of the polyps I had before even showed). Anyways, I was prescribed Steronate (Norethisterone) for 20 days. My gyno said to take them twice a day for 20 days & get back on them on day 5 of the bleeding. I stopped last Tuesday evening & three days ago I started to spot, very few drops. Is there a way to know what to do or when my actual period will start?