Just need to rant as I feel that my (very supportive) family and friends are even getting sick of me now!
More time off work last week due to a horrendous flare up! Spent the week housebound with my TENS machine and hot water bottle never out of my sight. Had to go back to work due to not getting paid for having time off and I'm no where near well enough!
I know there is no reason for a flare up to start but I had been so healthy (eating well and exercising for weeks before due to having to loose a few lbs for my first IVF appointment at the end of the month). I also put it down to a period (I was spotting for 12 days so decided it must have been a period). That has now stopped and my pain is no effing better!
Sick of going through the physical pain! Sick of going through the emotional back lash of the condition 1. ruling my life 2. isolating me 3. making me feel guilty for needing to rest 4. worrying about how I'm going to afford to live because I am too ill to work.
I am holding all my hope on the IVF appointment going well and starting treatment soon because im hoping it will finally help with the pain if I am lucky enough to have a successful pregnancy.
On the other hand I worry that if it does work and the pain doesn't go away, how will I cope? I know I am strong (all of us Endo sufferers are) and that I will do whatever it takes for me to provide the best life for my child, but I just worry that this disease will always own me and control my life.
Don't know what to do or how to think at the moment. Just wish it would give me an effing break because I'm sick of this s**t!
Sorry for ranting with no purpose but just had to get it off my chest.
Thanks for listening 😂
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JadeH92
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Amen sister! I feel you. I can’t sadly give much advice as I’ve been referred back to a specialist for further surgery but please know you’re not alone. Rant when you need too.
Willing to lend an ear if you ever need one and remember to try and be kind to yourself. Xx
Hi Jade, sorry your struggling at the moment, could I please just ask, why are you having IVF if you have 3 children? And are you playing privately for this? It’s just i have been trying for 10yrs for a baby with my husband but because of the stage 4 Endometriosis, had no success, we have had many rounds of Clomid and IUI with no success and we have had to pay for all treatment because my husband has a teenage son from before I met him, I have never even been pregnant and because of my husbands son, I have to pay for everything, I am 34yrs old now and the last round of failed IUI completely cleared me out of all my savings and now it’s going to take years which I don’t have to save for just one go of IVF, I just find it very unfair that I can’t get pregnant by myself because of a condition that was missed by doctors my whole life and I am not allowed IVF on the NHS all because my husband has a son from years before I meet him. I am so scared it’s never going to happen because the longer time goes on the more this thing grows, and I will be to old by the time I find that kind of money, sorry for the long post, just feeling really low at the moment and scared x
Hi Nikki, apologies but think you might have mis-read it? I don't have any children, I was expressing my concerns for if I am lucky enough to have a successful pregnancy through the IVF, what if my pain doesn't go away. I worry that although I know I will be a good Mum and I would always put my (currently very hopeful) child first at times like these when I am so ill I can't help but think it would impact in some way.
So basically I'm stressed because there is all the risk and the chance the IVF won't work (currently first NHS appointment coming up soon, I have been on Clomid and Letrzole in the past). Then on the other hand I worry that if it does work (and don't get my wrong me and my partner want this more than anything and I would do anything to ensure my child had a happy life). What if my pain doesn't go and I am this poorly every fee weeks.
Overall my head is just going into over drive at the moment and I'm over analysing every situation.
I am sorry you are going through such a hard time, I agree that it is unfair for people to dictate to us if we can potentially have children or not when there are women and families out there who are naturally able to have several children and they don't look after them. So I fully understand your frustration and I wish I could do something to help. I know when it is all you want you don't think about anything else and everything is a trigger, but we are all here to listen and try and help in any way we can! x
Hi jadeH92- I really feel for you. I am the same! I know that nothing really massively helps but I have cut out a lot in my diet. No caffeine, no alcohol and no gluten. For the mean time it seems to have soothed it.
It is ago sh** having this illness and I know exactly how you feel, totally fed up. But, try to push yourself to get out for walks at night just so you get a bit of exercise.
Hi Alice, glad your change of diet has seemed to sooth your symptoms and thank you for reply. It's nice to know we are not alone but s**t at the same time to know others are suffering isn't it! x
I know exactly how you feel I'm glad you've had a rant and have somewhere to voice it! This is such a great little network full of people in the same situation so the best place to rant!!
I'm also sick of feeling guilty for taking time off work, and feeling guilty for leaving early or working from home due to doctors appointments etc. I also have really supportive family and friends but finding it hard to be so unreliable and not being able to commit to any plans due to a potential flare ups - they understand to an extent but it still makes me feel so guilty when I have to turn them down last minute, I don't think they realise I literally cannot move from one position and crying in pain for hours on end!
Doesn't help that have also started on the inflammatory diet (no gluten, red meat, dairy, soy or refined sugar) so have to be the awkward person in the restaurant having to read from a different menu. Feel like this isolates me even further and makes me not want to go out with my friends because I can't eat anything!!!
I know this is a cliche but try and keep positive, think of all the things you do have in your life that make you happy! If you ever want to send a message and have a rant then feel free!! Massive fingers crossed for your first IVF appointment and I hope you get a break from all this nastiness!!!! xxx
Thank you soo much RazzleDazzle1 for your reply, you wishes for my IVF appointment (which actually went really well) and also your offer for a chat! Same here if you ever want a chat my inbox is also there!
It's easy to say it because i know when I'm feeling gulity nothing makes me feel better but my mum always says to me especially about when I am unable to work and when colleagues are being difficult is "you would swap within any one of them, your body is telling you to rest and you are doing all you can. So if you even manage to get from the bed to the couch that's enough". So just remember that we are dealing with s**t cards we have been delt and doing a good job as well!
So s9rry you are suffering. Can't give any hope I'm afraid. I've had endo 22yrs. Was only diagnosed at the age if 40 because I had to go private in the end to get answers.
I've had 2 lots of excision surgery and a hysterectomy. It's now back on my bowel and all my bowel symptoms are back. Looks like I have to have more excision surgery.
I've also had Ivf and we were blessed with my little lady who is now 5.
Never dreamed it would return but here I am at the age of 41, no ovaries to feed it with oestrogen and yet it's back!
I seriously believe that for some, it will just keep reading it's ugly head.
Hi Dangermouse381, thank you for your kind words and taking the time to reply.
I am happy to here of your IVF success but so sorry to here after all you have been through it has returned. I bet is has come as a shock as I wasn't aware it could grow in new places once you had, had a hysterectomy.
Really wishing you lots of luck if it is surgery you opt for and if not I hope you get alternative answers and some relief soon. x
Hi Jade sorry about the confusion, your right, I think I read it wrong and I think I was high on morphine when reading your post and feeling emotional too, so sorry you are also struggling with the fertility side of things too, it is so frustrating and I get why you are scared, I also worry about being able to look after a child with my condition also but I know I can’t give up and keep fighting every day, I wish you all the luck in the world xx
No worries I know it can get a bit confusing at times especially when drugs are involved 😂. Many thanks for your kind wishes. Also wishing you lots of luck in your journey just wish things was different such as funding and stuff as it is unfair! Take care x
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I'm glad you've had a rant and have somewhere to voice it! This is such a great little network full of people in the same situation so the best place to rant!!
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