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.

@Namechange600 I have IC as well!! Joy

I think the OP has has the best advice I've ever seen regarding endometriosis, I just would like to add please don't let them inject you with zoledex, or any other crazy HRT cancer drugs for this condition.

That's just big pharma trying to experiment and see what "fixes" us, so they can sell cures and make money. It's why endometriosis is so underfunded, because they are yet to find a drug that will fix it and they can't make money from surgery.

The endometriosis charity in the UK is funded by pharmaceutical firms, they try and hide this.

Nancy's nook is also a great Facebook resource.

Wide excision surgery is the gold standard and should be the only surgery undertaken for endometriosis, it is done in the NHS but hard to access, and most Endo sufferers end up in debt going privately.

The stabbing and bloating mid month and your other symptoms do point to endo.

I also had painful sex, a random one called lightning crotch (feels like a bolt) randomly and comes from nowhere. I also had boating, painful periods, a razor wire tightening feeling and aching and pain down my legs and hips, luckily for me it didn't spread to my bowel but was on my bladder, pouch of Douglas, uterus and pelvic wall.

Good luck!

@applecrumbleforteaagain no way!!! So one of my consultants has said that IC is (for me) mast cell activation syndrome (treated with antihistamines and low histamine diet which I’m not so hot on) but IC is what some bladder experts call it but actually it is more of a systemic problem (prof Khullar is the expert). The reason why it is more systemic for me is I also have Postural tachycardia syndrome and likely have Ehlers danlos too (hypermobility syndrome). (All three link together). Such a nightmare to have so much going on. Sharing this in case useful in some way.

And totally agree. Don’t go down the road of chemical menopause if you can avoid it. I am so glad I refused it. (Fertility treatment sent me quite mad so I thought I would reach badly to it). And really agree that pharma want a quick win drug to sell and no one invests in training more expert excision surgeons which is what actually makes people better 🤦🏼‍♀️

Good luck OP!!

@applecrumbleforteaagain @Namechange600 I will avoid hormone treatment! I reacted badly to the pill so no way am I going near the meds you mentioned!

Also, day 47 and no period. I’ve had changes to my cervical mucus and many signs over the past 2 weeks indicating that I might come on eg bloating, tender breasts, fatigue, bloated and gassy.

@stopthepain this sounds so familiar. I used to have incredibly long cycles. Four months was my record. This was PCOS for me. I used to take metformin for it while TTC. Eventually my cycles became more predictable and shorter but then the pain became overwhelming 🤦🏼‍♀️🤷‍♀️

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?

[quote Namechange600]@stopthepain this sounds so familiar. I used to have incredibly long cycles. Four months was my record. This was PCOS for me. I used to take metformin for it while TTC. Eventually my cycles became more predictable and shorter but then the pain became overwhelming 🤦🏼‍♀️🤷‍♀️[/quote]
GP said I probably don’t have PCOS because my FSH, LH and androgen levels with within normal range. However, FSH was at the higher end and LH at the lower end. I’m also naturally slightly underweight (it’s honestly just genetic and normal for my ethnicity, blood tests don’t indicate any vitamin deficiencies or abnormalities). We’ll see about cysts and fibroids when I go for my vaginal scan tomorrow. I don’t think I have PCOS although my long cycles are indicators of PCOS.

@AttilaTheMeerkat I got my ultrasound results back! They state “normal” but my endometrium is only 1mm AP, which seems thin. There’s also thickness at the fundus. No obvious abnexal mass. 53 days and no period. The longest it has been. I keep having symptoms that give me the impression that I’ll come on (bloating, horrible fatigue, bit nauseous and lightheaded etc).

Stopthepain

I would not accept "normal" at all here and your lining is very thin indeed. Something is causing all this to be happening and it is certainly in your interests to find out what it is. You will need to be persistent in order to get answers.

All my previous internal ultrasounds relating to the uterine cavity (ovaries were polycystic) looked okay apart from the thinness of lining as well but none of these scans detected the vast amount of endometriosis present within my uterine cavity!.

What are they going to do with this info now?.

@AttilaTheMeerkat thanks Meerkat for your support. The surgery says “normal no action required” but I’ve contacted the surgery to ask them for a referral to a gynaecologist. I asked for a face to face appointment but they’ve given me a phone call appointment… I’m not taking no for an answer. They need to stop fobbing me off!!