Can't take this (period) pain any more!

[tummymumsie]

I have just had a 'bad' one and I've never felt pain like it. I woke up this morning and it hit me like a train, I was bent double walking to the loo, shooting pains taking my breath away. Then going for a wee/poo... ouch!!! I was retching and sweating, I nearly passed out. If I have any gas it triggers the pain again. It's awful and terrifying and there's literally nothing I can do except try and survive until it subsides (which it generally does after 24hrs).

THIS IS NOT NORMAL, RIGHT??

Background: Since having DS2 (2yo) my periods have been agony, and they're getting worse. I had a CS and bf-d for 14 months, then my periods began again. I expected them to be painful, as they generally were before DC and also were bad after DD1, but they gradually got better (manageable anyway). This is getting worse.

I've been to the GP several times and first they tried the pill (disaster, as I always react badly to it... long story), a coil (another disaster... long story) and now Transexamic Acid (sp?) which does the square root of f-all!

Seriously considering a hysterectomy, can you just ask for one?!

HELP ME, PLEASE!!!

No, not completely but enough to take the edge off it so I can function. My GP also gave me another drug to take with it to prevent stomach ulcers if I have to take it on an empty stomach so it must be fairly strong.
I always thought I had a high pain threshold until this started

@tummymumsie @hoppyhop i get relief with 500mg naproxen twice a day (sometimes an extra half in the night thats the max allowed) plus 2x 8mg/500mg cocodamol (It's 8mg codeine, plus paracetamol, can buy over the counter at the chemist) 4 times a day, I get spaced-out with any stronger codeine.
But I need to take them exactly on time (set reminders) if I wait and I start to feel the pain coming back it's too late & I'm crippled again. I start this the day before my periods due.
This weekend I'd ran out of cocodamol, and only had naproxen/paracetamol. That wasn't enough :-(
Your gp should prescribe the naproxen no problem its specified for Dysmenorrea in the BNF. Even if it's until you can get further investigations.

Maybe try a different brand of mini-pill?

Mine is a wonder drug

I also take naproxen, 500mg twice daily long with regular doses of paracetamol. It means I can sleep at night without pain waking me.

I had polyps in my womb and my period pain was unbearable (also worse when I needed the loo). Apparently I was having proper labour contractions as my womb tried to expel my womb lining and the foreign objects (polyps). They were also incredible heavy. I would put your foot down and demand to be referred. Whatever the cause, you can't go on like this!!

@Tailfeather how did they find them? Laparoscopy?

I'll ask about Naproxen and cocodamol, but I just never want a period ever again! And that's what I intend to tell the Gynae.

Tbh I'm tempted by the mini-pill (can the side effects differ with different brands?) even though it gives me rage (nearly spilt DH and I up last time, the rows were awful) and depression. Both very out-of-character for me. But the lesser of two evils when it comes to the pain. And at least I could try and take it until they've found out what on Earth is going on in there!!

@tummymumsie Dildo cam! And then I had them removed by a laparoscopy. I think that's what it's called!

Buscopan is also good for the cramps and you can get it over the counter

I had my investigative laporoscopy today. No idea now what's causing my terrible period pains, as there was no signs of endo at all. I don't really know what to do now.

@CNizzle oh dear. Sorry that you haven't got the answers you need

Does anyone know if a laparoscopy can find adhesions from CS? Or is it purely for finding Endo?

Gynae app on Wed eve. Can't bloody wait. I've got pages and pages of notes and I WANT ACTION!

PS. I'm so tired at the mo. It's worrying me that somethings going on in there that's draining my resources and causing all this pain

Sitting in Gynae waiting room 🤞🏻🙏🏻🤞🏻🙏🏻

How did you get on tummy?

CNizzle - sometimes endo can present atypically and some gynaes do not always spot it. Have they told you anything else about your investigative lap op?. I would seek a second opinion from another gynaecologist.

Slightly frustrated as nothing is clear cut. He was a bit vague about everything but (reading between the lines) I think he suspects Endo and/or adenomyosis (sp) by looking at symptoms/ scan/ internal exam.

He said laparoscopy "if I want a diagnosis" (why wouldn't I want a diagnosis?!). But said even if it's Endo, there's "options" but not much they can do, and first stop would be hormonal treatments (which don't agree with me 😩), but generally it's "lifestyle changes" and hysterectomy would be last case (but not advisable).

He was pushing the coil as the best option for managing symptoms and possible Volrarol suppositories for pain

Just don't know where to turn or what to do. Don't want surgery if they're just going to turn around and tell me the same things at the end.

Hi

I would not accept this at all and I would urge you to seek a second opinion www.bsge.org.uk/centre/. I would also consider contacting Endometriosis UK www.endometriosis-uk.org/.

Not all gynaes by any means are up to date in such areas and I would urge you to continue to find someone who actually has a specialised interest in this area.

I have endometriosis and refused the mirena because I previously read that this is not a licenced treatment for endometriosis.

Trouble is that he was 'the expert' in this field, and I paid for a private consultation ☹️

At least he will write to the GP advising a laparoscopy etc so hopefully I can get that booked in and they can actually have a look in there. I think it's my only choice if I want answers. Hopefully they could sort any adhesions or Endo if it's there too.

Such a minefield. V depressed.

And do I go back on the pill/Mirena in the meantime to try and 'manage' periods/pain??!

I would still see someone else and at one of the accredited centres too.

I also think that lap surgery will give you some answers. What you do not want is a mere diagnostic lap because that will simply entail more surgery.

Hi, I have the same symptoms, horribly painful, long and heavy periods that drag on and on. I've had 2 c-sections and two hernia repairs on the last c-section scar. I have lots of adhesions too and endo has been mentioned but not officially diagnosed. I have been refused a hysterectomy as it is too risky with my previous surgeries so I just have to put up with it
One thing that did help was having a thermal ablation where they destroy the lining of the womb....not having the bleeding stopped most of the pain. Most women only need this done once, however in some women the lining is able to grow back after a few years (mine came back after a year, but that year was bliss!)
My sister-in-law is having a hysterectomy privately though and she doesn't seem to have had to wait long or have had to beg like I did

Duh, I meant to say be warned that surgery, even keyhole to remove adhesions can make things worse and cause more of them to form. I had a load removed after my c-section but they had come back when I had the hernia repaired.
I have lidocaine patches to wear on my scar which do help with the surface pain of the scar, but not the adhesion or period pain.

I’m watching this thread with interest. I have 48 hours of my life every month practically written off every month because of extremely heavy bleeding and pain which is unbearable, flooring and breathtaking. I’ve consulted 3 gynaecologists now, no joy. Apparently there is nothing wrong with me. I’ve had ultrasounds and laparoscopy, still nothing wrong. The only thing that vaguely helps is taking painkillers before the pain actually comes on. I know exactly when to expect it (for me it’s when my period gets slightly lighter on the third day and then pain comes on and really heavy bleeding starts again) so I start on cocodamol then. Not ideal and doesn’t mean that I can function as normal but stops me from wailing on the bathroom floor or vomiting from the pain.
I hope you find your answers, I truly sympathise

@ShortyShortLegs it's so hard to tell whether this is Endo/ adhesions/ something else entirely! So I'm reluctant to have the laparoscopy for fear of causing more adhesions (if indeed that's the prob). But on the other hand it would be good to know what on Earth is going on in there.

Is the thermal thingy during the laparoscopy?

The other part of me just thinks, go on the pill again (different brand) or coil, suck up the mood changes/ depression/ rage/ or whatever other side effects they might have and forget about periods altogether!

@Floralmoral is yours post-CS too? Or just after having DC? So horrible. I'm absolutely dreading 2-weeks time, when I know it's coming again.

The depo provera injection every 8 weeks is the only hormonal contraceptives that’s been enough to stop my endo being horrific.

The other hormonal option is usually through a consultant (probably what they were referring to) which induces a chemical menopause. For me it was amazing and the only time in my adult life that I’ve been pain free.

Laparoscopy is gold standard for diagnosis, and although there is a risk it can cause more adhesions they can also use it as an opportunity to remove existing endometriosis. Plus it’s the first step to getting a hysterectomy. Ideally a laparoscopy excision diagnosis and treatment in the same surgery, followed immediately by chemical menopause would be helpful.

Get your GP to sort your pain medication out. I have tramadol, codeine and oromorph for mine. Usually I use 60mg codeine equally spaced 4 times a day and paracetamol and ibuprofen also spaced out through the day evenly so I basically take something every few hours. I have oromorph (although that was prescribed by the pain clinic) to take as an when too, but I try to use that infrequently. I also have a tens machine and use electric heat pads.

Lastly, the endo diet can also help. There are mixed reviews of it but I certainly find it helps when I stick to it (usually in the build up to a period and during a period).

Keep pushing, it took me 15 years being a doormat and letting myself be talked over and ignored before I finally stood up for myself and was listened too.

I meant to add: if you can get pain relief sorted there is no harm in trying the hormonal methods (Mirena coil is really popular with some ladies) etc. Please do not think that hysterectomies or suffering on a pill that doesn’t suit you are your only options. Even stuff like acupuncture can help (I used to get it on the NHS until they cut the funding and it took the edge off the pain so much I was able to use really low level pain relief).

@ElyElyOy thanks, this is really helpful. The Gynae talked about a med to 'shut the ovaries down' is that what you mean about chemical menopause? The only thing is he said it could only be temporary (and then I'd be back to square one again). Maybe it would be good for a short period just to give me a break from the pain!

He did mention Adenomyosis too which sounded plausible but I think that's even harder to diagnose/treat 😩

Sounds like he is talking about zolodex.

I would still consider seeking a second opinion from one of the endometriosis accredited centres. You really do need to find a gynae who is really going to listen properly to you here.