When did your flare ups & daily pains start?

[Hannah550]

Hello, I’m hoping someone might be able to offer some views.

For background, I’m 41, I’ve always had painful periods since I was 12, (time off school then work etc, pain symptoms ignored by GPs etc) I was on the combined pill when I was 20 for a couple of years (but taken off due to making my blood pressure high) during this time periods still bad so just back to back the packets as much as I was able. I was then put on the Depo injection at 22 which stopped my periods altogether, which was great news although unbeknown to me was making sex painful (GP said it was all in my head!) robbing me of a sex drive. Destroyed my relationship but because I didn’t realise this was the cause I carried on having it for years because not having periods was brilliant. After another painful smear the nurse notified the GP who finally referred me to gyne who immediately said it’s the Depo. I then decided to be sterilised it’s now 2015. Periods restarted painful as before.

Now fast forward to 2021 start getting other abdominal including on fire pain attacks as well as daily lower level pain. I lost 2 stone in a few months (& more since and can’t seem to put it back on). After pushing GP and getting an gyne appointment in April 2022 the consultant diagnoses Endo, middle of June I had a laparoscopy where they removed Endo tissue from various places and unstuck an ovary etc.

Since my operation the agony of the period pain has continued but I thought the on fire attacks were lessening (as they the time they lasted had reduced) until this weekend the fire lasted 2.5 days (this before op use to be 1/1.5) and I’m still not back to lower level pain yet, I’m still at severe rather than moderate and suffering the worse diahorrra I can remember & I was diagnosed with IBS at 13 so use sadly to horrid bowls which no GP wants to revisit

I just wondered if anyone was in a similar position in terms of their history as my boss and I, can’t understand/get our heads round why there were no other Endo symptoms between 2015-2021 apart from the painful periods restarting (they were bad enough taking time off work as holiday if they fell on weekday which I know others of you will have done)

I would really value anyone views on any of it. Did your flare ups and daily pain just start out of nowhere?

It’s actually been nice just to write this all down and know sadly there will be others in similar positions

Thank you in advance

[Ess1982]

dear Hannah I read your post and couldn’t just scroll by. Similar situation to you although I was diagnosed with endo 15 years ago. Always had very painful periods that wiped me out 3/4 days a month but I could cope with that on painkillers. Had Mirena fitted 4 weeks ago and that has triggered a flare up. Hospitalised for a week on various iv antibiotics. Fast forward 3 weeks later and my pain is worse than ever on naproxen 4x a day plus paracetamol plus amitryptaline I’m at my wits end. Been awake since 12:00 in agony could only take paracetamol at 2:30 waiting for it to kick in. Even then the pain will only come down to 8/10 but I’ll take that because the stabbing agonising blood curdling left ovary, back pelvic pain has me floored. I consider myself to have a high pain threshold.. but this is destroying me. I’d love to tell you why we have moments where we can cope then one thing changes, I have no idea why. I wish I did because then I could fix myself.

Anyway sorry for the long depressing post. Just wanted you to know that you are not alone xx

[Hannah550 in reply to Ess1982]

Thank you for replying and it’s not a depressing post but the unfortunate reality a lot of us are in, I am so sorry that you are currently stuck in agony too, you are not alone xx If you are taking 1250mg of Naproxen a day, you can also take two Zapain (500mg paracetamol/30mg codeine) every four hours too might be better than just paracetamol on own to take the edge off, as you sound like me, these pills only take a slight edge off, you are still stuck in agony.

What I do find depressing that no one seems to be given any proper pain relief, despite speaking to different GPs over the years about the agony from either the periods or from early last year the flare ups they are all quite happy to send you away without anything stronger and have us suffering with pain that’s above a 8 out of 10 level. They got me pain free in the recovery room after my operation but after that it’s you’re on your own. You tell them that naproxen, Tramadol, zapain, codeine doesn’t touch it, it’s like talking to yourself!

They seem to think it’s acceptable from a pain and also an impact on your life perspective.

After getting to my lowest point ever last Sunday where I just wanted someone to put me down as I wouldn’t let an animal suffer like this, my feelings which were of tears about have now turned to anger. We live in a first world country and this is ridiculous

I have my follow up consultant appointment on Tuesday and I really hope I’m not talking to myself

[Ess1982 in reply to Hannah550]

hi Hannah, thank you for your reply. I could have written that myself. It really does feel like that, last night I could’ve happily been put down myself! The sheer agony this inflicts on our bodies only we understand. And you’re 100pc right in which sane universe is it ok to be on so many painkillers or to have to live a life waiting for the next pain relief.

Last night I prepared my son (my only child) that I was going to have to call an ambulance his little face looked so broken, I just couldn’t cope with the agony. It was at its peak. I packed my hospital bag then at 10:00pm it finally reduced by one point where I could catch my breath and I thought it would be better the try and sleep at home. Because let’s face it Friday night in A and E no gynaecologist what we’re they going to do? My son asked me if I’d be home in the morning (and not to lie) because last time I left home in the middle of the night to go to hospital.

It’s taken everything from me.. my gynaecologist tells me endo isn’t ‘life threatening’.. but it takes your life away it’s so so horrible. I have no words for the agony.

Surgery is also over 9 months away, at the moment I can’t even get into see her despite calling the receptionist everyday.

I’m not even menstruated at the moment, it’s ovulation and this has me floored. It’s never been this bad ever. I wish I’d never had the Mirena fitted xx

[Hannah550 in reply to Ess1982]

My heart goes out to you that you were at the phoning the ambulance point last night (I can’t imagine how you managed everyday with a child as well, you are so brave and more resilient than you know xxx, I live on my own and told the consultant I wouldn’t feel comfortable living with someone and this was just from the IBS let alone plus the Endo symptoms)

You really do sound like me. People have asked me, why do you not ring 999 when your in that agony, my reply is like yours what exactly are they going to do, absolutely nothing, unless they Will completely knock me out and then give me the same stuff to take home to use the next time. My gut is that I’ll just be in pain there as opposed to home and I think home psyology at least has to be better.

It maybe not be life threatening but it is life destroying/debilitating which in this day and age is ridiculous. My best friend is a pharmacist manager and she’s astonished that’s I’m and others like you are left in this state to try and cope and have there lives dictated by it

Just be a pain in the arse to that receptionist, phone every day and even tell her you were going to ring the ambulance or were feeling like being put down. I do not believe the consultants do not have the time to call an existing case. I’ve been introduced to a Endo nurse to get in contact with (reply not instant but within a few days) perhaps the receptionist could provide details of your areas nurses as well if they are saying consultant to busy 🙄the nurses can push the appointments and write to GPs xxx

[Ess1982 in reply to Hannah550]

Hannah I’m so sorry I didn’t thank you for your reply. I’m in such a bad way I have another infection. Tramadol isn’t touching my pain.. in desperation I’ve made an appointment to see a private consultant as my nhs consultant can’t get me in until November 18th and I won’t survive until then. I’ve never known pain like this.. I can’t sleep I can’t eat, I’m constipated I can’t do anything for my son or my husband. I can’t work.. my whole life is on standstill. I’ve never felt so low.. I think my family would be better off without me. My poor mum in her 60s had stopped work to come and look after me because my husband is so worried. Mentally I’m done in.. and normally I’m so strong I don’t recognise myself.

[Hannah550 in reply to Ess1982]

I’m so sorry that the flare up pains have not reduced for you. I’d hoped you would have dropped from agony to moderate (hopefully less) pain by now

Are you feeling constipated rather than actually eating enough to be constipated as I’ve got this strange pain urgency pain ache near my back passage area which seems to get worse when I do eat anything and I’m just pecking at things rather risk a large meal. My diahorrra stopped but I seem to have this instead, which I’m wondering is what you are experiencing, you are not alone

Please don’t think that your family will be better off without you, they love you, you say your husband is worried, he cares and your mother knows that you are in this position because the health system isn’t working properly for you, this is not your fault.

I also find Tramadol is useless it doesn’t touch my period pains let alone these Endo attacks, nothing touches the normal pains let alone the agonising ones.

I had my follow up consultant appointment (four months after my op) last Tues and I asked her if it was actually normal with this condition to be in flare up agony for almost 3 days and then with severe pain for another 5 days which no medication touches. She said No it wasn’t normal for the condition but frustratingly couldn’t tell me why or what else it actually was

I told her that it was disgusting that GPs think it is acceptable to let people be in all this pain when they’ve previously been in asking for pain relief. I also mentioned you and said that I wasn’t alone in being in this amount of pain during these attacks. I also told her that I’ve never been in a place in my life that I wanted someone to come in and shoot me but the other weekend I was at that point and I blame them for allowing people to be in that state.

She has said to go on Diajest tablets and if that doesn’t work to then go on Zoltadex injections

I have said that she needs to tell the GPs when writing to them to prescribe the Diajest to not ignore me, if I come in for medication to deal with any side effects and for the pain. I said this is wrecking lives and is not good enough. I will be interested to see what the letter says.

I’m hoping it’ll be this week as my period starts next week and need the tablets for day 1

My manager has suggested I go private (even on principle it annoys me the amount we pay in etc) if the above doesn’t work as he is concerned about this last on going attack and isn’t happy it is Endo

I think you going private will help make the tables turn for you, you are the paying customer and please be robust (take your husband or mother, I had to do mine on my own, I think it will help having two views being put forward) and explain that it is unacceptable and debilitating condition to be and be honest about the not wanting to go on. You may need to shock but I hope going private will really put you in control instead xx

[Ess1982 in reply to Hannah550]

hi Hannah thank you so much for your reply and asking your doctor for me that is so kind!

Things haven’t improved for me sadly. I just have no energy to post. Because only so many ways I can say how bad things are. 111 and gynaecologist consultants or A and E can’t help and don’t care. I have noticed with chronic pain they aren’t bothered. I’m pacing with my tens machine on having taken paracetamol at 1:00 then tramadol at 3:00 if I can also take a dicloflenic suppository. Going to ask my doctor in the morning.

I did see the private consultant yesterday. He was incredibly reassuring and confident that he could operate successfully. He said a full hysterectomy (although that’s my choice) with bowel resection would be optimal approach. I’m keen to try and keep my right ovary if I can go help me ease into menopause (I also have rheumatoid arthritis). He said this Is possible if the ovary is healthy and I understand the risks of keeping an ovary in. Ge told me that my hospital shouldn’t have even said they could do the bowel operation as they aren’t a registered endo centre. In terms of pain relief he said the only way I had left to go was morphine…. He also said he was INCREDIBLY surprised I had got this far woth minimal pain given how aggressive my endo actually is. I told him I get that the scabs show it was bad in may however I was functioning with way more good days than bad until I had the Mirena coil fitted. He said o would’ve ended up at this place eventually…. Anyway like I said very reassuring doctor. All pointless of course if we can’t afford the surgery. He said he will write to me costs etc…. So that’s another thing to worry about.

Hope you are feeling ok Hannah, o really appreciate you taking the time to reply to me and allowing me to ‘talk / vent’ to you, strangely it helps me.. especially when alone in my pain xxx

[Endrocoops]

reading these posts make me realise why it takes so many people years before they are diagnosed (everyone is so different!)

I assumed my pain was normal “growing, food, digestion” and everything in between that were regularly told is normal.

The biggest oddity for me is that I’ve always had fine periods 3 days long no pain(unless I’m in birth controll then they are awful).

My endro pain was always 4-5 days after my period and on a few odd random days in the month (very easy to put down to bad digestion) so at 29 I was officially diagnosed with endro stage 4 after moving to America where my doctor here took my symptoms seriosuly even though I only went in for a cyst(. In the UK I was also told all women get cysts they go down naturally.)

diagnosed and operated on in less than six months. I scratch my head now as to why I was ok living with good and bad days and when it started and If I really think about it it’s probably been with me for years but we don’t clock it till it’s a serious day breaker (like when we get large blood filled cysts)

[Hannah550 in reply to Endrocoops]

Thank you for replying

You’re right everyone is so different with a theme of similar symptoms but nothing exactly identical

My flare ups were normally 8/9 days after my period but this time day 3 after and this period was less painful so I feel I’m really paying for that now, still at severe pain and off work and it’s now day 9 after

I was told the same thing about cysts here in the UK they don’t take them seriously. I had one when they scanned in Oct 2021 (told not to worry but they would refer me) and then when consultant wanted another scan in April it was still there but by the time of the operation in June it had burst and they confirmed it was an endo cyst and they had to clear up the mess inside

It sounds like the US are more switched on or just more aware of women’s issues. I hope they are taking good care of you now

We all seem to put up with the good and bad days and a lot of being fobbed off by health care professionals who don’t get it or want to get it

The surgeon/consultant who did my operation was shocked when I explained about my IBS/bowel movements and that I won’t consider ever moving in with someone so that part of my life doesn’t exist. She said that wasn’t right and my bowels not normal and on my discharge notes sent to the GP she put for it to be looked at it ASAP, had the GP appointment and she did absolutely nothing as all her colleagues before her!

[Endrocoops]

Hannah that sounds awful!!! I’m so sorry to hear this is the case for you I’ve told my doctor here that I would like one child and then a complete hysterectomy eggs included and she’s absolutly fine with helping me achieve that. She’s happy for me to try naturally or refer me for IVF. I would be to terrified of living day to day questioning weather or not my cysts were going to burst inside of me. After reading all these stories I’ll be sure to get this done before I come home!