Lou93

Sorry to hear about your situation it’s a great place the vent on here as many of us have been through something similar.

Did a&e just send you home with pain relief then? If it’s no better ring 111 I felt guilty in the best when I was in pain but found 111 helped me more than a&e.

Have you been diagnosed then or in the stages of finding out what’s going on?

I hope your husband calms down and maybe you could discuss why he’s acting this way🤷‍♀️ do you have anyone else to speak to about things? xx

JenRow7 in reply to Lou93

Thanks Lou. Yes I rang 111 to begin with and the nurse on there was superb. Have had an ultrasound showing cysts and was waiting for NHS gynaecology referral. Everyone I've seen doesn't seem to think my cysts would cause any pain though and are nothing to worry about. GP I've rung 5 times and seen once all different staff not really able to get across the extent of my pain on the phone.

Yeah got my sis but shes busy with home school and her hubby has leg injury! My mum passed away 1.5 years ago.....could really do with her right now. My mil was a nurse ....we get on well but shes not in anyway comforting!

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Lou93 in reply to JenRow7

Great to hear they were good with you ☺️ ah ok I see well let’s hope you get seen soon then, from my experience if your pin gets worse ring them again they have to see you.

Glad you have someone to speak with and I’m sorry to hear that must be hard xx

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Sassy123455

Hi Jen, so sorry to read this, In my experience, I don’t think people, especially men (I’m not being sexist) really know or understand what endo or cyst pain is like. It’s the invisible illness thing. We look fine on the outside! I’m currently waiting for surgery to remove a large cyst on my right ovary, I’m in a lot of pain, on constant co codamol and can’t manage without a hot water bottle, so I can sort of understand what you’re going through. Would it help if your partner read up on the condition or read some of the comments on this forum? It may be that he just doesn’t grasp how the condition can be so debilitating. As Lou said though, this is a good place to vent and I’m happy to listen. Be gentle and kind to yourself, Sarah x

JenRow7 in reply to Sassy123455

When I've asked him before he says he has read about it online?!

I had a little talk with him.....which I wouldn't have done without you guys saying!

Turns out he thought they'd tell me today right away what the problem was. And be able to fix it. He really has no experience of hospital! He also doesn't really grasp about coronavirus because luckily it hasnt affected us directly out in the sticks . He doesn't realise about wait lists and changes to services etc etc I guess

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Moon_maiden

So sorry you’re going through this. It’s very difficult to cope with this condition. I’d bet not many farmers like hospitals. His behaviour isn’t excusable but if you think he gets protective could it be frustration that he can’t help. He shouldn’t be treating you this way regardless, I hope you do manage to tell him how you feel. What pain symptoms are you getting?

I did the same last week, hoping for intravenous painkillers, ended up with diclofenac and staying in for CT, had my usual Oramorph and Tramadol as well.

I did speak to pain consultant this week and he added Pregabalin to the rest including Amitriptyline, but I think it’s helping.

JenRow7 in reply to Moon_maiden

Hi moon maiden I think you helped me before! Co codomol and naproxen. Yeah wouldve killed to have intravenous and lied out to have a break. Instead was crying in waiting room bent over a chair until 1am. Asked for oramorph but didn't touch it. I think if I take what I've got on the dot with food I'll manage. Anything stronger wont be up to looking after the little one. The pain is there constantly in left abdomen and back then squeezes in waves making me crunch up or hold onto something.

Yeah maybe I expect too much! He is really practical. Think hes just trying to squeeze my hospital into his already packed day. He does long hours everyday and weekends without rest so he just gets himself exhausted and wont be told. He seems calmer tonight. We ve been through a lot together medical termination / ectopic/ mums death. Emotion is hard for him I guess.

How long do you have to have pain to see pain clinic? Should I ask gp about this?

Pregabalin is strong isnt it? That must wipe you out . Xx

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Moon_maiden in reply to JenRow7

Hi how are you feeling now? Hope things are a bit better 🙂For some reason I replied to your last message on a new link 😂, that’s got to be the meds, something has to go, preferably endo and soon 🤣

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JenRow7 in reply to Moon_maiden

Hi, yes a bit better today actually- I think sleeping better has helped too. Had a chat with my hubby and he just thinks that I am not pushing hard enough for treatment. The private secretary is going to set me up an appointment but the NHS has taken over the hospital so she is trying to sort that out. I feel happier to know that it will be this week. My MIL still doesn't think that's good enough so I think she's been influencing hubby's opinion. Fingers cross something shows up! Thanks for checking back on me x

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Moon_maiden in reply to JenRow7

That’s great 🙂 and hubby has given an explanation that explains his frustration. If only it was that easy 😂 I’ve done nothing but push and still don’t get the right treatment that I should have done. 🤞 secretary sorts something, let us know how you get on 🙂

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AllthatGlitters

Hello I hope your pain is a bit better today?

Naproxen doesn’t really help I find, only if I have a slight pain in the stomach it may work.

I find that downloading fact sheets from the NHS is good for other people who don’t understand our illness. Maybe this would help your husband see what you are going through. I am sure he will get frustrated at times as when in pain your loved ones want to help but there is nothing they can do really. Sending a hug x

Moon_maiden

I’m surprised they didn’t give you a bed to lay on, I at least got that, I think it was because I couldn’t stand or sit. Does your abdomen go shaky inside? They think I have nerve damage hence the Amitriptyline and now Pregabalin. The pain nurse originally added the Tramadol after A&E last year.

I’ve worked on farms and with horses, certainly appreciate how hard it is for you both. He should have some time off, does he not have help on the farm? It’s still no excuse for not talking though, it’s always difficult to do, like you say you’ve both been through so much. It’s hard when you lose someone

Any pain that goes on for longer than three months is classed as chronic pain. I thought six but the consultant said three the other day. I’m still in the thoughts ‘if Id had the right surgery in November I wouldn’t be in this mess’ although it wouldn’t be a guarantee. I’ve made a complaint on that.

Definitely tell your GP to do an urgent referral to the pain clinic.

I ended up paying to see him last year when surgery screwed it up. I was getting desperate.

Dire_Straits

I don't like your husband's behavior. Read about narcissists, it looks like he has no empathy. And yes, when another people around, narcissists are so cute.

Think seriously about him.

JenRow7 in reply to Dire_Straits

Yeah well his Grandad was one 100%. All the family agree there. So something I'm aware of. He can be really caring but seems to struggle when stressed. He does have a lot of stock on the farm I'd say 4 times more than my brother in law or dad ever farmed. So he runs on empty. And his dad he works with needs a new hip and wont get it. So this adds pressure right now.

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Gio73 in reply to JenRow7

Hi there, I sympathise totally, but your husband does sound pretty narcissistic as some have said above. A distinct lack of empathy. Having said that, I;ve had endo for 8 years and it's only in the last few months that my husband has been asking how my pain is....I had to show him a video of some caring concerned male partners (on endo UK website) - perhaps show him this so he can see that you're supposed to be supportive when your partner has endo? endometriosis-uk.org/endome...

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JenRow7 in reply to Gio73

Yeah hes better now his work has eased up. Been getting my hot water bottles etc. He does run himself into the ground works everyday with no days off. So hes pretty low on reserves times I have an emergency. His mum was a nurse but dont find her to be a caring or comforting person either tbh. She just interrogates me about my treatment. They are a tough breed. She put it into his head that I'm not pushing enough to be treated. Really helpful about the link thanks I'll send it to him. Think it's that he cant see the pain and doesnt know how to help that gets him.

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Gio73 in reply to JenRow7

My hub is a bit shit so not preaching. I know from experience!

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Tomims

Hi, First you said he is selfish and horrid then in replies you made excuses and defending,

There is no one can feel your pain, only you or someone has Endo like you. Don't think about how make the other feel that you are really suffering, just pray to God makes you stronger to handle with this. All the best

sarahsarah123

I wonder if your husband is acting like that because he doesn't like seeing you in pain and is scared and frustrated that he can't fix you himself/do anything to help- but that comes out as being uncaring/angry? It sounds strange but my mother reacted in a similar way to me being ill. Alternatively, it could just be that he is really stressed about other things or he just lacks empathy, as another poster suggested. Either way, he needs to get over this and be a supportive husband. Hope you get some help asap.

JenRow7 in reply to sarahsarah123

Yes I think that's it.

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Washington1

So sorry to hear you're experiencing so much pain. Have you got a tens machine? In my experience this often won't take away the pain, but it can help. I use the Ova tens. Also, one thing I learned from a nurse I know is to ensure I take my painkillers early enough. I used to leave it until I was in a lot of pain before taking the meds, but I learned that's not how they work, so now I take them right at the start when there's the first twinge. I know it doesn't help when you still have 2 hours before the next dose, but thought I'd share this as I didn't realise the importance of the timing of meds for a long time. (Btw, I take an orodispersible form of tramadol (to stop me throwing up) - I can't drive whilst taking it, but they don't knock me out. I used to take Voltarol suppositories, which worked well on the pain but eventually gave me side effects that couldn't be lived with). And so sorry to hear about your husband's reaction. I agree with Sassy, that endo is an invisible illness really and because you can look ok on the outside, people just don't understand it. Sounds like it might have pressed a very uncomfortable button for your husband though. As Lou says, I'd wait until things calm down and then ask what caused him to react in such a way? I think when people are on overload they can react in very unfortunate ways.

I do hope you get some answers and some proper relief soon. xx

JenRow7 in reply to Washington1

Yes that's really helpful. My dad has one for back pain so I could borrow it. Definitely agree about the meds. Sometimes I'll try and leave out a dose or see if I can go longer without but not an option right now!

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PurpleSynesthesia

Morning sweet,

What a horrible ordeal - big hug & prayers from me.

I have been through similar scenarios. A couple of A&E pain episodes & then I had horrendous morning sickness with our first & was hospitalised 3 times. Couldn't leave the bed much at home because any movement caused me to vomit. Any smell triggered sickness - including the smell that people naturally produce through their skin, that normally nobody can actually smell 🤦🏻‍♀️. I spent most of my days sleeping outside the bathroom door & crawling in to throw up. It went on for 20+ weeks. Similar with our other 2 babies but much milder each time (although I had urinary incontinence with the 3rd & it would happen when I was throwing up). I don't miss those days 😖

Hubby was usually attentive & good to me but was horrendous through the first 2 pregnancies & would huff about, crash and bang in the kitchen, leave smelly washing up overnight & do laundry but make it obvious he thought it was my job. Then he wanted sex some evenings & I had to keep my face under a pillow because of the nausea & I started to despise & resent him.

He & I spoke after those episodes & a lot transpired (but it did take years to get where we are now, not months). He explained that there were so many things going on in his head - he was firstly struggling to come to terms with what I was experiencing and secondly he was annoyed at himself for not being able to fix everything & make me right. He was quite depressed in those times with work uncertainties etc. and never told me about it - it showed itself as anger and frustration (which is apparently how most men show they're depressed). He said there was also a bit of selfishness thrown in there because nothing was as he wanted it to be. The one thing he stressed was that he never intended to hurt me. We reminded ourselves of the vows we made on our wedding day - he honestly got choked up on "in sickness and in health," & apologised. I explained to him that I didn't need him to try to fix anything but loving me meant practically stepping up & being emotionally present with me. (We prayed a lot together & separately, & felt our hearts softening towards one another).

He really changed & was much more present & helpful, without the huffing, throughout the 3rd pregnancy.

We've been together 10 years this April & we've both grown so much. Just want to share that hope with you. Prayer & honest communication glued us back together - in sickness and in health.

Lots of love xx

Jade-enginely

I hope they resolve it for you soon Jen!!

I’m a mechanic and after Covid and being off I hated the thought of being off when I got endo and I’ve had to take even more time away from my job and work on the office side atm cause I get really bad pain, I can’t cope a day without a hot water bottle so maybe try one? It doesn’t get rid but it makes it that little bit more manageable. My surgeons NEVER bothered to contact me after my surgery so I don’t even know how bad mine is but I’m pretty sure it’s come back already! Try speaking to your doctors too they maybe prescribe you something that may help 🖤🖤🖤 sending love to you x

Luna20

Unless someone has had the same pain as you than can never really understand. Men especially are not good at empathy.

June_Viola

Hi - sending you a hug! It sounds difficult.

I'm home mending from a laparoscopy to have a look for endometriosis, and I've noticed my husband getting snippy with me too (he's normally really nice & helpful). In our case, I know he's overworked and overstressed. So, I'm just trying to "spread the love around" and give him a little space to rest up too by redirecting my social energy out to this forum and a bit to my friends. It doesn't help him that I'm trying to learn as much about endometriosis as I can and I've been talking about it a lot over the past few days.

So, I sympathise with you for the grumpy husband.

My suggestions for an ordinarily nice husband who is grumpy about seeing you unwell:

1) Identify a health-care person who can have a coordination role in your health care, then reassure grumpy man that you have a person helping you.

2) Give the grumpy guy you love a really small task that is easy for him to do to help you, and then say thanks and tell him he's helping you (e.g. lifting something that's kind of heavy - grocery bags?).

3) "Share the love" with you support network - have a girl-talk with a pal or come back and type a good note on this forum. Talking helps me, and it might help you too.

I hope your love "un-grumps" soon.

Also: If your pain gets high, remember to call 111. NHS 24, on 111 will tell you if they advise making a trip to see an out-of-hours doctor. And of course, A&E is there if needed.

JenRow7 in reply to June_Viola

Hi great advice. Thank you. I've managed number 3 and found a friend of a friend in a similar position. Just had a laparoscopy like you. I'll have a think for number 2. Hes at work by time we get up and in after we ve had dinner.....so makes this hard! And number 1 ??? Does such a person exist! My gp has 1 out of 5 on reviews. 40 min phone wait. 3 days for a ring back. Feel theyve washed their hands of me!

I've got a laparoscopy booked for april or may privately though so light at the end of the tunnel! So just trying to get to then.

Hope yr recovery goes well xxx

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June_Viola in reply to JenRow7

Ha ha - I know what you mean, asking if a health-care coordination person exists!

I made an appointment with my GP to ask who that person could be for me. My GP let me know that the GP simply files the health reports they receive - they don't act unless there is a specific recommendation for an action in a letter from a consultant. However, I'm in line for an MRI for endometriosis, so it's the consultant who's organising that MRI that's my touch-point for endometriosis care for now.

So, I would guess that just now, your laparoscopy contact is the one for you.

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JenRow7 in reply to June_Viola

Oh yes I see what you mean. Yes I can ring my consultant he said if I have questions. So I see what you mean now. Just getting in the frame of mind. I'm not one for causing a fuss or getting things explained. Someone said privately you get an hour....I was out in like 10 mins cos I dont want to take up time!

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June_Viola in reply to JenRow7

I completely understand what you mean about not wanting to take up time. I feel that pressure too.

The way I'm trying to deal with that feeling is to make a list of questions before the appointment, and then ask the questions while I have their attention. Having an "agenda" helps to get through the awkward feeling.

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JenRow7 in reply to June_Viola

Yes good idea. I'll do this. I was much better overall then had a bad day yesterday when I replied to you. Just realised my actual gp gave me the lower dose co codomol than I'd been having. Urgh so that's why I wasn't getting on so well I think.

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