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!!!

@AttilaTheMeerkat I looked on that link you sent and unfortunately he is the Gynae that is listed 🙄

I think at this stage it's up to me where I go. And laparoscopy seems the logical next step (although not very appealing).

Yes the chemical menopause (zolodex, prostap etc) is temporary but for lots of people it makes a massive difference as it starved the endo. I had a 3 month dose that gave me relief for 6 months and even the year after that my pain was only 50% what it had been before. Considering the pain levels I was having (unable to walk, talk, vomiting even when taking maximum prescribed medication) it was incredible.

I have adenomyosis too. It’s harder to treat and ultimately a hysterectomy is the cure, but mine is managed the same as my endo.

It doesn’t sound like you are on any prescription painkillers at the moment so get some and give yourself a bit of thinking space :)

OP & Flora I could’ve written your posts. Only difference is I’ve never had a CS and had two laparoscopies. Nothing! No endo, no lesions, no fibroids. 48hrs wiped out every single month. I know that feeling of waking up to excruciating pain, unable to use meds and just groaning and writhing helplessly. I e just come through another month. Thankfully because of my age, it looks like I might be able to get a hysterectomy provided the injection to force temporary menopause (which I think Ely was referring to)works. This is the first month since the injection if there’s no pain they will go ahead with surgery.

@ElyElyOy how long ago did you have it? Do you know what the side effects are? I am so sensitive to hormonal changes as they trigger migraines/ mood changes/ sometimes other pain 🙄🙄🙄 so I have to bear that in mind too. But if it's not the same as The Pill it might be ok.

Where are you now with it all? Are you looking to have a hysterectomy eventually?

Thanks for your advice - my head is scrambled with all the options.

I keep thinking I should have another coil fitted ASAP to try and stop any more periods. but would it affect a laparoscopy result? 🤔

Also has anyone tried Voltarol suppositories as the Gynae suggested for pain relief?

@tummymumsie no CS here, just post DC. It’s gradually got worse over the last few years. I sometimes think no one actually believes me how bad it is.

I had it about 5 years ago. I also had hrt (tibilone I think it was called) which reduced the side effects. I can’t take the mini pill or combined pill due to migraines and how I react to them so I do understand your concerns. For me it just causes hot flushes and mild snappy mood swings (but just like PMT). It was worth it for the lack of pain.

I have had the suppositories when I’ve had surgeries: they work quickly! Also the “urgh” factor passes really quickly: I had to use rectal suppositories for IVF and it basically didn’t bother me after the first one :)

If you do go onto have a laparoscopy (and I would give this serious consideration) these are some questions to ask the surgeon. You should not be given details of the laps findings whilst you are in the recovery room because this is poor practice. An appointment should ideally be made a week or so post op to discuss the findings.

Questions to ask post lap:-

1. What exactly was found and what was done?

I would ask this as sometimes laps are done as purely diagnostic procedures thus more surgery may be needed.

1. Were ovaries and fallopian tubes healthy?
2. Did you have an ovarian endometrioma and if so how big?
3. Did you have many adhesions?
4. Was the bowel and bladder involved in the disease?
5. What stage is your endometriosis? (stage 1 is "mild")
6. What are the results of any biopsies?
7. Were any nerves cut to relieve your pain?
8. Was your appendix removed?

10. What further treatment is recommended?

Add any other questions to that list you can think of no matter how insignificant it may appear to you.

I'm writing this from my hospital bed following the laparoscopy and they went in and found "extremely extensive" endo. Ovarys and bowel and womb all stuck together. They've taken it all out and have also suggested the chemical menopause for a while to stop it reoccurring.

Obviously I can't say now whether it's helped longer term but just knowing WHY and that there was something wrong feels positive.

Get on the NHS and get it done. They've been brilliant here.

Fingers crossed for us all 🤞🏼

Sorry - I mean they've taken all the endo and a couple of calcified fibroids out. Not that I've had a hysterectomy. Though honestly that wouldn't be the end of the world!

The fact that the bowel was involved in mine in a big way (they've had to stitch it up following the removal) explains a lot asthe pain seems to surge when I'm getting near needing a poo or a fart (TMI!). Sounds like yours might be the same?

@MissWimpyDimple my goodness! Thank you so much for taking the time to tell me. And well done you! When will you be able to go home?

I'm definitely decided on the laparoscopy. But getting hold of my GP is like getting an appointment with the bloody queen! 😡 really struggling, and all the while my next period is edging ever closer. I'm dreading it.

Was it adhesions sticking all the organs together?

Take it easy

PS. Yes my Bowel (and poss bladder) are definitely involved in all this

Sorry to jump in. Currently waiting for a laparoscopy (I rang yesterday and was told 6-8 weeks). They eventually gave me codeine phosphate after suggesting nothing else and leaving me to get in with the pain, but it’s made me SO much worse. I honestly didn’t think the pain could get worse...

Does anyone have any suggestions on any other meds I could ask for?

I’ve also tried mefenamic acid, tranexamic acid, co-codomol, paracetamol and ibuprofen. Nothing works! Well, except heat, the pain from burning my tummy on a hot water bottle is preferable to that of endo.

I’ve not got a heavy flow, so I’m not bothered by that.

Hello all. Yes a few days on and I'm glad to have had this done finally. I'll have to report back when I'm recovered and have had a period I guess.

Yes the organs were all stuck together. They did damage the bowel while unsticking but it's worth it if it makes a difference.

My wounds are quite a lot bigger than expected, but again, I can live with that!

Meds wise- naproxen helped. I never had heavy flow either - just very very painful.

Could you ask for viagra from the gp?

www.webmd.com/women/news/20131209/viagra-for-menstrual-cramps

And they have also mentioned zolodex to make sure the endo doesn't come back around the bowel.

Try a TENs machine. I have one for endo and it has been a life saver.

I was diagnosed in 2001, I tried the mini pill, then pure progesterone, then chemical menopause for 6 months as my endo was described as "aggressive" and finally had a laparoscopy. I was 27/28 years old.

Although the synarel (chemical menopause drug) had cleared out a lot of deposits, I still had them on my bowel and ovaries, plus I have a lot of scar tissue. This was the point they told me to try for a baby if I wanted one. Luckily by some miracle I managed to conceive both Ds1 and Ds2 naturally.

But I overhauled my diet, upped my fruit and veg intake, did yoga to relieve stress all which helped.

The TENs machine is my first port of call before meds. Weirdly I treat endo pain like labour. Normally when your body is in pain it is trying to tell you something is wrong, but labour is knowing why your body is in pain. I have learnt to accept the pain of endo. Child pose in yoga helps me relieve some of the pain.

The biggest improvement to my health was quitting work but this is clearly not an option for everyone. Reducing stress can help alleviate symptoms.

A chemical menopause is harsh on the body, I definitely took HRT at the same time, hot flushes, mood swings etc were awful but better than the horrific pain.

I have decided on the laparoscopy. Unfortunately getting a GP app was a bit like waiting for one with the Pope! So I'm now staring down the barrel of another period (hoping it comes this weekend so I have help with DC).

GP given me Diflofenac (sp?) suppositories, something to relax muscles (IBS drug of some sort), and the usual paracetamol. I'm DREADING it  want to go to sleep and wake up when it's over.

@MoBiroBo interesting about the lifestyle changes and glad to hear they've helped. Most not options for me with DC/ work sadly

@tummymumsie I think in a way I was lucky when I was diagnosed, as in 2001 (but I had been going to the doctors for years about my period pain)

We relocated for Dh's job when Ds1 was a toddler and I was working part time. We just made sure that his new wage covered my paltry part time take home pay, plus we live oop norf so my house is probably a hell of a lot cheaper. I was meant to return to work but realised my health was so much better.

I don't know how understanding your DH/DP is and if he is on board then you really can leave him to do all the childcare and meals whilst you are in agony.

Mindset is a huge factor, the more stressed you get about the pain the more painful it will be. I know, I know, I have been there on codeine, on the floor, praying it would just render me unconscious. Yoga poses can help, have a go. Exercise is meant to help but quite frankly I have never felt able to do it. TENs machine is £40 from Amazon and helped so much.

You could try acupuncture, it did help me a bit or a stress busting massage.

I basically viewed it that the medical profession was doing everything they could so I did everything I could too (diet, Chinese medicine, acupuncture, yoga, meditation.) When I finished the chemical menopause the only treatment they could offer me was testosterone based and I refused due to permanent changes to the body. They said there was nothing more they could do. It was devastating.

So I have to report back (warning TMI!)

The Voltarol suppositories are a game-changer! I'm about 12hrs in (usually peak pain) and I'm sitting at my kitchen table having a cup of tea! It might be a fluke (and I'm about to go downhill) but as soon as I felt the pain coming on (mainly in my back this month), I took the Voltarol, and BINGO! I'm almost pain free. I could cry I'm so happy!

I am also not constipated (which I always am usually) as I had a big 'clear out' yesterday (I warned you TMI!), and this really affects my pain, which is always related to my bowels.

I have been doing a bit of exercise this month (again, not like me) including dancing, walking and yoga. And I feel determined not to let this ruin my life for 3 days every month!! Might have made a bit of difference (probably not).

God I hope this is the end to all this. Still moving ahead with laparoscopy, and slightly dreading the point when the Voltarol wears off but overall feeling a little optimistic!!! 🎉

Oh god I spoke too soon! pain was worse than ever last night - nearly blacked out at midnight. Horrendous.

Oh no! If I’m honest, I took the codeine phosphate that I was given.....pain was worse than ever. I wished myself dead.
I didnt take the full dose granted, because I’ve heard it can affect people badly, but this was on a whole other level! And if you suffer pain with endo, you don’t even think there is another level....

On the plus side, I have a laparoscopy next week. So I’m hoping it’ll help even just a bit. I’m terrified now though incase it makes no difference.

@Pinkstars2501 oh I'm so with you on this. I've never know pain like it. I didn't know whether to vomit, black-out, cry or just die on the floor.

Out of interest - how long have you waited for laparoscopy? I've emailed Gynae to beg for either a speedy referral or some pills to start a chemical menopause. I just can't go through it again. EVER AGAIN. I just can't...

Well, I first went to the docs and was ignored 16 years ago. But don’t let that scare you, my doctor was total shit. I then went on the implant and had no symptoms of a period of any kind so left. I recently went back to a different doctor in October. I told her how bad it is etc and how it affects every aspect of my life for a week every month. She then referred me for ultrasounds, then due to the size of what they found, ca125s which thankfully were clear. Then I had an mri and ct and some more bloods. I had a meeting with the consultant on Valentine’s Day (romantic eh?), then I rang 4 weeks later and was told 6-8 weeks. But they called yesterday as there’s been a cancellation so it’s next week. So from the initial referral, about 6 months. But from them telling me they’re going to do it, 6 weeks, would have been 12 weeks had it not been for a cancellation.

I know you don’t really need all the hat info, but gives you an idea of the difference I had between a shit doctor and a good one.

Really sorry that sounds awful. So I suffered at the hands of the nhs for 13 years. Begged my doctor for referrals, just told me to go on the pill which didn't work for me. They referred me to a clinic which was a 5 min chat with a gynaecologist, did zero tests and told me to just go on the pill again despite my bad reactions. Honestly, my life was so bad looking back. 3 weeks of every month I was unwell or in agonising pain. I went privately - friend recommended a gynaecologist and it's the best thing I ever did. She diagnosed endometriosis - prescribed medication that actually helped with the pain (never even been mentioned by the nhs/GP previously). Also some great probiotics which has massively helped (the gas pain you describe) is no longer there.

I know it's not possible for everyone. It was a stretch to afford the private consultation (total about £800 overall) but I'm so glad I did as was finally taken seriously and given the right tests and treatment and really my life has completely changed.