Active discussions

Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To wish endo was better understood

37 replies

Anxious256 · 01/07/2019 05:29

I had endo removed a couple of years ago. I have woken on a period early with pain and nausia. Paracetamol is not touching it. However, do not think it will be viewed as a good reason to have time off work particularly on a monday and do not know what if anything would be meds which allowed me to cope. I feel people do not understand conditions they cant see.

OP posts:
Unicorndiva · 01/07/2019 05:32

I’m with you on this one, I’ve had about 2 hours sleep due to mine :( hope you feel better soon! And yes it really isn’t understood, apparently it’s just bad period pains to my friends and family Angry

Original poster
Anxious256 · 01/07/2019 05:40

Sorry to hear that unicorn. What painkillers or treatment have you had?
I used to have econac suppositories which were good but the GP is relluctant to prescribe.

OP posts:
Original poster
Anxious256 · 01/07/2019 06:28

Its now time to start my morning and i have just been sick with pain. The heat means i am not able to use my usual a hotwater bottle for palin relief. If this was a one off problem i feel i would be off work and consider an emergancy gp appointment due to the level of pain. Instead i have to get in to work.

OP posts:
VivienneHolt · 01/07/2019 06:33

Yanbu, I’ve seen a friend of mine suffer with it and it’s horrendous.

One thing I would say is that she has told her work and they have been incredibly supportive of her taking time off when she needs it, and working from home etc when possible. It might be worth you speaking to yours and seeing if any adjustments could be made? It’s a serious chronic illness and you deserve some extra support.

HelloGabriel · 01/07/2019 06:34

It's unbearable and I really feel for you. For me the only relief is codeine and even that is hit and miss.

Sometimes a stronger Ibuprofen can take the edge off.

FaithInfinity · 01/07/2019 06:41

Definitely. I have codeine on repeat prescription because it’s the only thing that gets on top of my pain. I also always have deep heat patches for when I’m mobile.

I’ve been admitted 3 times with sudden onset of abdominal pain and vomiting, suspected appendicitis (it hasn’t been my appendix yet)I had all kinds of tests (Ultrasounds, CT, colonoscopy before I requested a gynae referral who agreed to do a laparoscopy and found endo. I’ve had painful periods since I was 13. Endo was diagnosed at 36! Also I had no idea that endo could cause chronic pain until this. Fortunately it’s been much better since it was treated but I wait for it to return again..recommended treatment is hormonal contraceptives but they make me feel crap so I’m a bit stuck.

I hope you get through today OP. I did see some places are becoming ‘endo friendly’ employers. That’s the future!

blueberry25 · 01/07/2019 06:46

Poor you SadI'm a sahm at the moment with endo and adenomyosis. I had endo removed last October but it seems to have become really bad now. I take mefanamic acid, tranexamic acid and codeine(30mg/500mg).I wear big Tena knickers on top of other sanitary products to stop the leaking and wear heat pads on back and tummy. The pain is still horrendous even with codeine and sometimes I take tramadol. I really feel for you Thanks people do seem to just assume it's just bad period pain. I guess it is hard for some people to comprehend the severity of pain unless the have felt it

Original poster
Anxious256 · 01/07/2019 06:46

VivienneHolt Thanks, work does know about the endo and would allow me to work from home. I do not feel overly comfortable speaking to my male manager. It may be better in an airconditioned office if i can brave the commute.

My biggest concern is taking time off may result in seeing occ health. They were verry dismissive preediagnosis and said i was healthcare seaking and that time my gp had signed me off for was unnecessary even though the GP was considering hospital.

OP posts:
TakenForSlanted · 01/07/2019 06:54

Not just endometriosis but women's health in general. Women are just told that it's "not so bad" and to basically suck it up and get on with things. If we're particularly lucky, we run into someone like my very much male and gay (it matters in that he hadn't ever lived with a grown woman since leaving home) boss, who'll come out with utter shite like "period pain is psychological, you just need to embrace your womanhood on a deeper level and it'll go away".

I've been tested for endometriosis and I don't have it. In fact, nobody knows what I have. Except that my mother had it, too, as did her mother as does my sister. My very unhelpful gyn just says "well, we can't know, it's probably genetic". And then helpfully patronises me about not being supposed to take the prescription painkillers unless absolutely necessary.

Well, thanks. I do know that. I also know that medical research doesn't prioritise women's health. Arguably, if half as much effort was made to deal with gynae issues as with erectile issues, a whole lot of women would be a lot better off already.

Original poster
Anxious256 · 01/07/2019 07:04

Sorry to everyone suffering.
FaithInfinity I have had simmilar admissions where they give pain killers antisickness and fluids and the surgons poke about for a couple of days.

OP posts:
Tallgreenbottle · 01/07/2019 07:08

Diclofenac suppositories.

AngelicInnocent · 01/07/2019 07:10

DD has been in and out of hospital with it since she was 11 until they decided to investigate . She takes mefanemic acid, cocodamol and has morphine for her worst day each time.

It really sucks

Original poster
Anxious256 · 01/07/2019 07:10

blueberry25 I know what you mean about protection. I hate wearing incontinence pants and am generally lighter with the coil but get sudden gushes.

How did you get the pain killers? I have codeine 15 mg but in hospital tend to get dehydrocodeine or morphine.

OP posts:
Original poster
Anxious256 · 01/07/2019 07:12

TakenForSlanted What symptoms do you get? Its awful not to have a diagnosis.

OP posts:
Original poster
Anxious256 · 01/07/2019 07:16

AngelicInnocent Sounds really bad for you and your DD. Who prescribed the painkillers? I wish i had something that neant i was not curled up vonittinfg on my worse day, which oddly is not necessarily first day of my periods.

OP posts:
Original poster
Anxious256 · 01/07/2019 07:22

Tallgreenbottle Agree supositories a re fantastic and the only thing other than iv meds which bring fast relief. However, a nale gp would not prescribe more after my first pack as said the risks outweigh benefits. However, an average of 1 a month kept me able to work as i could then use paracetamol codeine and step down to ibuprofen.

OP posts:
AltasCloud · 01/07/2019 07:23

Only Ibuprofen takes the edge off for me, as do rest and heat pads.

Diagnosis of endo/adeno is so hard to get, I was told it was just normal period pain.

I was ignored for so long, my endo caused infertility. I'll never forgive the doctors that ignored me.

Waiting on yet another surgery now. I feel so angry - being ignored led to not being able to have kids, yet still I have to endure horror of this pain every cycle knowing my life has been ruined.

Has anyone had a hysterectomy by choice in their 30s?

TakenForSlanted · 01/07/2019 07:26

Just really excruciating period pains. Excruciating as in "lying on the bathroom floor crying like a baby, unable to get up, never mind make it to the kitchen in order to get the painkillers from the top cabinet". With migranes and overwhelming nausea.

Or, as my GP calls it "normal".

Original poster
Anxious256 · 01/07/2019 07:32

AltasCloud Have you been seen at a specialist centre? A few people on health unlocked board do talk about having histerectomies in their 30s.

OP posts:
ScreamingValenta · 01/07/2019 07:40

100% agree. If it was better understood, perhaps it wouldn't have taken a decade for me to be diagnosed.

"lying on the bathroom floor crying like a baby, unable to get up

Sums it up completely.

A hysterectomy was the only thing that sorted it out for me (I was 42 when I had it). In the end even codeine and Naproxen wouldn't touch my pain.

If I'd been offered one in my 30s, I'd have jumped at it, but I doubt it would have been offered as I'm childfree - even at 42 I had to have a talking-to about the loss of fertility. I expect if you can say you have 'completed your family' rather than that you don't want children, you might get one more readily.

DtPeabodysLoosePants · 01/07/2019 07:40

I take dihydrocodeine and paracetamol four times a day every day. I can't take NSAIDs as I have gastritis/gord and asthma.
I've had 7 lots of analogues and found the combined pill taken back to back for 3 packs at a time helped most if I couldn't have analogies.
Nefopam really helped someone I know and tramadol was helpful for me. The ones I take are the ones that work best and give me the least side effects.
Amitriptyline is good for chronic pain too but not sure if just at period time. I have pain daily so it helped with that.
I've tried pretty much everything over the years (30).
My period is due today and I know I'll be crippled with back and hip and leg pain did a couple of days.
You have my sympathy Thanks

DtPeabodysLoosePants · 01/07/2019 07:49

Try the endometriosis society for information on the best gynae consultants near you that have a specialist interest in endo. That's what I did and got referred 30 miles away. That prof got me through my nurse training. He's moved away now sadly but by now I know what works for me.
If you only get pain with your period then if you are able to take the combined pill then do this and run the packs together so you're not getting a bleed. Standard and simple treatment in my experience. I still got daily pain but it wasn't as bad and didn't get the monthly pain of the period either. Ask your gp about it.

blueberry25 · 01/07/2019 07:53

@Anxious256 you need a sympathetic and understanding doctor to prescribe the tablets. Some doctors that I have had, really hold back on the painkillers and try to push me into having a mirena coil. Hormones tend to make my mood very low, snappy and on the different types of pill I had periods every 2 weeks. My best friend said that she found it really hard for her doctor to remove it and had to wait. I really don't feel comfortable having one. Luckily I have found a few GP's that are happy to prescribe and they give you a box of codeine and tramadol. The codeine tablets I get are a box of 100. I have a bottle of oramorph for really bad months. You may have better luck having a consultation with a private GP to get some stronger painkillers or keep trying to find a sympathetic doctor Thanks

Otterses · 01/07/2019 08:04

@TakenForSlanted sums it up perfectly, right down to a GP declaring it 'normal'. Apparently crippling cramps, vomiting, depression, migraines and painful sex are all perfectly normal and I should just get on with it.

You have nothing but my sympathy OP. I have endo and PCOS and it's just crap.

DtPeabodysLoosePants · 01/07/2019 09:48

And here comes the pain Sad I've just taken the younger ones to school which is a 3 mile round walk. My hips, bum, back and knees hurt along with my thighs. And I'm not even bleeding yet! It sucks. That gnawing, dragging, twisting, nauseating pain.