Feeling lost

[PastaGirl13]

I feel completely lost today. After finally getting my diagnosis last week I was on top of the world. Now I’m back in reality.

My pain is so bad. The past 3 weeks in particular have been so bad and my symptoms are all flared up so I’ve barely left the house. I hate sitting in my bed all day feeling this way so I’m trying to find a job but I don’t even know how I’d manage working when my pain is so bad. What can I even do? Working feels impossible but I can’t stand to just sit here like this anymore.

I am trained as a teacher but can’t do the job because of the physical strain so I don’t even know what I’m supposed to do now. Has anyone else ever been in a situation like this? I feel like I’m stuck in an endless cycle of pain but I’ve tried all the treatment options available to me right now. I want to try and move forward but I don’t even know where to start. How do I get back on my feet?

Everyone I’ve spoken to about it has no idea what to say to me so I just feel like a lost cause. I just don’t know what to do.

[Joonaspryte]

I’m so sorry to hear this, and I know where your coming from.

I myself am living on painkillers, but that doesn’t help with my thoracic endometriosis. I am doing a lot less hours in family shop, and feel more of a hindrance then help when I do go.

In some cases, I heard endometriosis can be classed as a disability, may be worth looking into.

Have you thought about online tutoring? I’m sure you have though.

Just know , a lot of people on here understand how you are feeling. Xx

[PastaGirl13 in reply to Joonaspryte]

Thank you for your kind words, it's really good to know that there are people out there who understand what I'm feeling.

I haven't really considered tutoring but that's actually a good idea. I work with primary aged children but could definitely explore tutoring or after school support. Thank you!

Thank you for the support, it means a lot to me xxx

[BloomingMarvellous]

Hear you loud and clear. It took me a fair while to work out what works for me pain wise and to reduce the effects of flares. Diagnosis is a part of that process but in itself leaves as much fear, dread worry and questions in its wake as pretty standard response. Getting myself off that “arrrggghhh” reflex has taken a fair bit of work to work out how my puzzle works and as far as have been able to see everyone’s way through is variable. It takes a lot of focus to figure it out for yourself but you are surrounded here by others who can cheer you on and metaphorically hold you in the shit moments.

My top process tips are get a large sheet of paper and list every symptom you have including the emotional stuff and try and score it today . I noted what things I was going to try and any dosage regime and stick to it. Then put it away for a week . Next week get it out and score it again and repeat for 3 months, then stretch it out to fortnightly. After 3 months I did mine once a month. Putting it out there helped me not internalise it all the time , writing down what I was trying helped me not throw the whole shed load of stuff at once and the record kept me clear about actually after 3 months whether something was effective or not. Keeping myself stood back from the panic helped in itself .

There are so many options to trial, good recommendations but there’s also a lot of reasoning behind and studies out there to give you clues as to your brand of Endo shit. So small steps at a time. Bite size ……

So for one frequent UTI’s… hormone imbalance, may have been subjected to a bug called klebsiela ( more common with endo sufferers) so first heal the gut ( don’t start with probiotics that’s a error but high quality Omega 3 made up of Dha/Epa , to soothe and heal the gut tissue daily ) and do a lactose tolerance test ( dr google here ) . The rationale here is that the klebsiella can alter your processing of lactose. It’s a 48hr later answer. Lactose free milk, yogurt, hard cheese, butter, clotted cream are on the menu. All should tolerate up to 250ml standard milk product . It’s not a complete pain in the bum to change. Omega 3 is also brilliant for nerve pain, hormone regulation and endo sufferers tend to have a higher requirement in first instance. Any nutritional change takes 3 months at dose to establish any real change. You may get results way before but you also can’t entirely judge. Try not to add more to the pot at once it gets overwhelming when you are already struggling. Small steps.

I added Curable app which a GP can give you six week free trial or they do a two week free start. Pain is a complex beast and although I’d done all kinds of meditation etc to no avail this is different. It gives me way more control. My GP did this alongside nortriptyline which I do at half the lowest dose . The meds gave me the sleep I needed to help cope with the pain whilst the Curable got to work large scale. When my pain would get I much in the middle of the night I would sometimes call the Samaritan’s . It really helped and it enabled me to step back from my loneliness, fear and utter frustration enough to then be able to sleep and manage a bit in the day . Enough to make strategic choices on how life needed to change.

I recommended a couple of other things to you last time so won’t add more to your table but keep nagging them for the proper care from the medics too. There will be better times.

[PastaGirl13 in reply to BloomingMarvellous]

Hi, thank for all your advice. It has been massively helpful to learn more and actually have a starting point when it comes to finding some answers. I feel like I have so much to learn and this has definitely helped me there!

I definitely get caught up in the doom spiral and forget that every day is different and just because I have symptoms/pain doesn't mean that my efforts to make things better aren't making a difference. I'm starting to track my symptoms now so I can really see what is helping and what is making it worse. I really do think that will help me not go crazy haha!

Thank you for your advice on healing the gut as well. It is something that I need to explore as I know it is making my symptoms worse. I am going to look into all of it properly.

It's really nice to have some cheerleaders here to help me through this. I needed that. Thank you for all your support xxx

[Cailleach]

Your GP should be able to help you with painkillers. It can be helpful to have something on a regular basis if your pain is constant/ frequent and something stronger for flare-ups.it can take a while to get something which is effective for you with minimum side-effects. You could also ask about referral to a Pain Clinic.

You say you’ve tried all the options available to you now, have you had a laparoscopy? If it hasn’t helped was it done by a general gynaecologist? If they are less experienced they can miss areas of endo.

Hope things improve for you soon.

[PastaGirl13 in reply to Cailleach]

Thank you for your response. At the moment the GP hasn't been able to do anything for me pain wise but I've recently switched to a new GP who is amazing so I've booked in an appointment so ask about that!

I haven't had a laparoscopy yet. I was formally diagnosed through MRI so I'm on a waitlist for a surgery consultation but the waitlist for just an appointment is 6 months so I dread to think how long it would actually be before I can have any surgery. That's one of the big reasons why I've been feeling so lost at the moment because 6 months feels like forever when I feel so ill.

At the moment I'm just trying to focus on what I can control to hopefully make life a little bit more bearable while I wait! Thank you again for the message xxx

[BloomingMarvellous]

You might want to explore the Amitriptyline/ Nortriptyline route for pain killing. Not for everybody and they take a while to kick in. Nortrypline has fewer side effects to contend with generally. A GP can prescribe. I had been through the pain team - twice- to no avail until my own GP suggested this plus the Curable.

Worth a conversation for the Reason that Endo tissue is unlike other tissue around it; because it’s noted to have extra nerve rich fibre, and the nerve fibre has less or no protective sheath around it. It’s partly why it’s sooo frigging painful. Literally raw nerves. Standard pain meds do not work on these nerve pain pathways like amtryptyline or members of the same medicine group that do. It’s a medication you take daily, often before bed as it can help with sleep and the mood lowering that happens with Endo too. For some folk it’s really not the answer, but if some of your pain is falling with the centralised pain bracket and pretty much continuous it’s worth considering. I take half of the lowest dose and it works fine for me, at the full lowest dose I am groggy a lot of the day ! Between this and everything else I do I am now mobile, sleep and have a life back but it’s defo a combination of things not just one. It doesn’t treat the Endo itself per se but the fact of being able to mobilise, stress reduction throughout one’s life, improved sleep all mean the affect on overall welfare is huge. As stress itself is demonstrated to increase inflammation and actively feed Endo tissue there is an indirect relationship to its overall progress by properly controlling pain.

Often people are frightened of trying different routes but as long as you keep your water intake up, for many the downside is light. There are those for whom it is highly problematic and it can have negatives that mean it’s unwise to keep battling against. These usually show relatively promptly like any mood changing antidepressant. A good GP will be aware and able to monitor to ensure it goes well.

[PastaGirl13 in reply to BloomingMarvellous]

I actually have taken amitriptyline before! I am also a migraine sufferer so took it for a while to help that but I kept having to up the dosage and eventually got to the point where I was a walking zombie so had to stop but I haven't tried nortriptyline and it may be worth looking into. The amitriptyline was actually a pretty good medicine for me but the sleepiness was just too much so this might a good option if it has less side effects.

Thank you for all your help, it has been so good to gain some real perspective on what's actually happening with my body. I will have a look and bring it to my GP. Sending love x

[BloomingMarvellous]

You’re very welcome. I can’t function on the 10mcg dose of the nor’ for same reasons. So I’ve ended up after getting enough on board to start with to using 5cg by just halving the pill. It works for me to just intervene enough for all the other things to also work together. If the amitrip’ worked well bar the sleepiness it maybe a good point to start. At least it’s not so devastating on the good fats balance as paracetamols or like the slew of issues with opioids.