to ask how you manage severe endo pain and work

[Frizzzhead]

I have severe endo. Several very large cysts and probably pretty wide spread endo. Pain got worse during the last year and is during my period and the days before pretty unbearable. Also severe pain when I ovulate. so almost half of the time I am in pain but it is excruciating during my period.

I have been referred to gynecology and think I will need surgery but I am looking at a very long wait due to covid. GP is not very useful with pain management. I have been told to take paracetamol/Ibuprofen and also tried mefenamic acid but it helps only so much. GP recons, only surgery will sort it really.

My issue is, the pain is now horrific. I managed work with WFH and taking the laptop to bed and curling up but I don't think I can do this much longer. So far I didn't take time off but it's getting to the point where I really don't function anymore. but I cannot take every months 5 days off sick esp when I look at a very long wait for surgery to fix this.

How do others manage? any recommendations on pain killers?

Took 1-2 days off each month, paid. Hot water bottle; struggled through, found all the painkillers utterly useless. Was very lucky with that job. Did a bit of work at home. Eventually I begged gynae for surgery, was ill for 3 weeks and very well for many years after that.

At one point I was on the OCP ‘Back to Back’ Can’t recall why I stopped.

Oh when I stopped drinking so much alcohol and eating to many sweets it did marginally somewhat, enough to be worthwhile.

Do you follow an anti-inflammatory diet? No Gluten, dairy etc it does help. I don’t have half the amount of endo bloating that I did have. Also have they considered Zoladex jabs etc to stop ovulation?
You have my sympathy as a fellow endo sufferer.

I found that I needed to take ibuprofen for a couple of days before the pain starts, and that kept it at a manageable level. Paracetamol did nothing. The mirena coil has sorted it out completely for now though (I can't take the pill either).

Do you follow an anti-inflammatory diet? No Gluten, dairy etc it does help. I don’t have half the amount of endo bloating that I did have. Also have they considered Zoladex jabs etc to stop ovulation?

nope, I love bread, ice cream and cheese. bloating is not an issue for me though. Zoladex was never discussed by GP. guess this is a gyne decision?

The pill (I can’t remember the technical term but it wasn’t the combined pill as due to clots I wasn’t allowed on that one!)worked when I was younger. I also have a blood clotting issue and migraines but managed to be prescribed one which helped - not completely.
I’m now in my early 40’s, I was diagnosed seemingly lucky when I was 20 due to a ruptured ovarian cyst. After years of similar cycles of pain, heavy blood loss and numerous laparoscopic operations (literally every 5 years)
Work was supportive I was allowed to WFH and had a standing desk put in as sitting at a desk at times made the pain worse!l - & medication.

My last lap operation I had a mirena coil fitted and for the first time I don’t need an operation after 5 years it’s controlled it so well - I happily had a second fitted. It changed my life. Yeah it took a few months to settle but compared to my previous pain it’s worth it! I won’t have another operation to remove the endo I’ve agreed with my consult that the scar tissue damage means hysterectomy is the better choice - but while the coil works I’m sticking with that as long as possible. I’m trying to hold on to my bits till menopause in the hope it will mean no more endodermitis and no hysterectomy.

@Frizzzhead

Have you spoken to your work? They might be surprisingly flexible

no, they won't be. It's not the kind of work place. At least I can WFH and noone sees me. I am also a lone parents and really need the job so trying not to rock the boat.

Sorry Nancy you have been through quite a bit. I am in the North West. Will speak to GP again but they just aren't very useful.

This is shit I’m sorry.

You have my sympathy OP. I’ve had two laparoscopies for endometriosis - I was lucky to have a sympathetic female gp who diagnosed me in my 20s.

I would ask for a different gp and request codeine and naproxen to help manage the pain. Over the counter cocodol doesn’t cut it for me, but it might work for you if you’re not on it already. Tell them it’s massively affecting your quality of life and your ability to work. I only take it on the days when it’s really really unbearable.

There’s a shortage of naproxen at the moment so the Feminax ultra you can usually buy over the counter is out of stock in large parts of the country.

Buy a plug in heat pad that you can wrap around you - I have one like this: DIZA100 Heating Pad with Auto Shut Off, Fast Heating Technology, Machine Washable,Soft Flannel Safe Heating Pad for Back Muscle Neck Shoulder Pain Relief (12 x 24 inches) www.amazon.co.uk/dp/B07XP2RQHY/ref=cm_sw_r_cp_api_i_HF2.Fb9EG592F?tag=mumsnetforu03-21

I used to take the progesterone only pill on a 3-monthly cycle to control it but the one I was on was discontinued . I understand you not wanting it given your other health issues though.

So sorry to hear this.
I have severe stage 4 endometriosis and adenomyosis plus pcos.
The main thing that has helped me is having an excellent surgeon perform excision surgery and remove all the endo (I was riddled with it). Prior to my operation I was housebound for 2.5 weeks a month, in terrible pain during periods and unable to function or work. Horrendous pain when urinating and bowel movement (I would see stars sometimes it was so bad).
Now, I manage to get by. I still have pain but can mostly function normally. I do take codeine and naproxen plus paracetamol depending on the severity of pain.
So I say get some stronger pain meds and push for the operation and check the surgeons credentials - excision is much better than ablation. Join the Facebook groups too. Have also heard Tens machines are good for endo pain too, best of luck xx

Bit of a list, I've suffered for years with no real medical interest in doing anything about it
I have been on prescribed drugs for it for about 20 years now minus pregnancies. The cura heat pads for back pain help a lot - make absolutely sure that they are not in direct contact with your skin though. They got hotter than they feel.
I also find that if I can feel it coming and get out to walk, or even go to the gym (not that I feel like it) being active really helps. However after it has started, activity doesn't help and just precipitates flooding.

Regular Advil to stay ahead of the pain, a day or two before your period starts. I would get an electric water bottle and also warm baths. It is awful

Intake 600mg of Ibuprofen per dose. The box says 400mg maximum dosage but the doctor says I can increase it as long as I don’t take it longer than a few days. I alternate with the maximum amount of paracetamol and also take buscopan which is a muscle relaxant . It isn’t 100% but it does help.

Cocodamol, very hot baths that are almost painful to sit in and a long hot water bottle you can wrap round your middle like this www.thehotwaterbottleshop.com/collections/long-hot-water-bottles
I take mine into the office and no one has ever said anything. It’s so cold in the office for COVID ventilation colleagues have started bringing hot water bottles in too!

Apologies for hijacking the thread but when you talk about pain does it ever feel like awful stabbing trapped wind type pain?
I have endo and I'm waiting for an app with gynae. I've had a laparoscopy years ago but wonder if I have adhesions from my c section scar. Sometimes it almost feels like velcro is being torn inside me..

You’re literally right at the bottom of the pain relief ladder of options: there’s so much more. Ask your GP for a referral to the pain clinic.

I’ve taken time off before but usually use a heat pad which is easier wfh and take ibuprofen and paracetamol together. I can’t sleep though so going to speak to GP about something stronger.

@TeaPot40

Apologies for hijacking the thread but when you talk about pain does it ever feel like awful stabbing trapped wind type pain? I have endo and I'm waiting for an app with gynae. I've had a laparoscopy years ago but wonder if I have adhesions from my c section scar. Sometimes it almost feels like velcro is being torn inside me..

Yep! In fact for years I had crippling pain and diarrhoea every time I ate, within 20 mins. Ten years I lived like that. Even had two laps and had endo removed in that time. Then I went to a specialist for excision and he said my bowel was completely mangled by adhesions. He removed them and that has never happened since - that was about 15 years ago. Sadly the endo always recurs bloody quickly and my adenomyosis causes daily pain. I had a c section four years ago and my pain is worse than ever but nobody wants to do another lap (would be number 7) and want to do a hysterectomy but I’m reluctant for many reasons.

Be super careful of zoladex. It’s licensed for six months use only for good reason. I had a much longer course in my mid 20s and it has permanently wrecked my health. I would never touch it again, but problems like this are less common when you are on it for only the six months.

Sorry your suffering and it's so sad that the medical world are just as ignorant to the physical and mental pain endo causes. Just know there are some people out there who care, and can and will help. It's just sometimes hard to find them through all the poop.

After years of many different painkillers, the different pills, coils etc my GP finally got through to my gynecologists who allowed me to have GNRH injections (it was alot of bs and hoops to jump through due to gynecologists thinking they know best) but once I started the treatment I really didnt understand just how unwell and medicated I was. GNRH really saved my life and sanity! Dont get me wrong it's not going to be for everyone but certainly I would recommend considering before relying on taking more cocktails of meds.

The link will give you more insight for gnrh

endometriosis.org/treatments/gnrh/

You know your body and how bad the pain is dont let anyone tell you you can manage and make do.

A bit alarmed by the info on that page as it says that monthly or 3 Monthly injections of zoladex can be given for endometriosis but only the monthly version should be used according to NICE guidelines as the 3 monthly is not as effective.

I will day that when I first went on zoladex it changed my life - I was in less pain, no fatigue and working long hours, doing great. That’s why I stayed on it longer but it has caused significant issues for me longterm (there are unfortunately a lot of women who’ve had a similar reaction to GnRHAs -
Most of the info online is about Lupron since this is what’s mainly prescribed in America). I wish I could go back and stop after six months. Not everyone who has a longer course will react like me but there are so many with very similar stories.

Problem is what happens after this treatment - some people have longer lasting effects, some don’t.

I had stage 4 endo (front and back of uterus) with cysts. Had severe pain (along with vomiting and fainting)on first day of period (couldn't go to school/uni/work on that day) - jesus it was horrendous.Tried prescription painkillers with no success - I'd just vomit them up. After a few years l discovered that if I took simple paracetamol the night before the pain was due, and kept topped up, the pain never came. The difference was amazing. Since then I've had a lap (2006) and haven't had any pain since.

@SinkGirl

Be super careful of zoladex. It’s licensed for six months use only for good reason. I had a much longer course in my mid 20s and it has permanently wrecked my health. I would never touch it again, but problems like this are less common when you are on it for only the six months.

I had terrible problems with zoladex and only had three monthly injections. The 3 stone weight gain was the tip of the iceberg. It didn’t even help with the pain.

The Mirena is the only thing that’s allowed me to live a relatively normal life. Before this, I used a TENS machine, heat pads, wheat bags, 8 had acupuncture and shitloads of painkillers... mostly codeine based. It helped a little but not to the point I could fully function.

I had two surgeries, a 6 month course on GNRH and two children. Still no improvement. Now on a mirena and the mini pill continuously and I have my life back. It's been almost 3 years since I last had any pain at all. I was dubious and it took a month to settle in but honestly, game changer. Would absolutely recommend.

@FenellaVelour weirdly I lost 3 stone but have had what seems to be hormonal related issues for over 10 years since, doctors aren’t bothered to find out what’s going on really.