alone and hopeless

[Endowarrior1807]

I just can’t help but wonder does this ever truly get better.

I’ve always had painful periods but over the last 2 years, I’ve got worse to the point where I don’t even recognise who I am anymore.

I don’t understand how I could go from who I was to the state I’m in now.

I feel so alone even though I live with my family but I don’t think they truly understand how much pain I get.

This is messing with my career and I’m struggling to work and it just seems like a never ending situation where things just get worse and worse.

I feel like I can’t do any of the stuff I used to do before it got bad, whether that’s eating what I want to or exercising - it’s like everything has changed.

I have my surgery in a week but it still seems like nothing is going to change. I’ll still be on my Provera medication and so I’ll still be getting all the side effects and my consultant has already told me they can’t remove all of the endo.

Sorry for the rant but I feel so lonely and hopeless

[Walker24]

I’m sorry to read what you are going through. To help me not feel alone in this I’ve joined this group but I also follow people on social media who have endo to read about their experiences. Sometimes it helps, sometimes it’s doesn’t but it’s good to know I’m not on my own. I have not used provera so I can’t comment on that unfortunately. Good luck for your surgery

[Endowarrior1807 in reply to Walker24]

Thank you so much for your reply. As sad it is that so many of us are suffering, it’s helpful to hear others experience it with us

[Avourneen]

I'm really sorry you feel like this. I know how it is because I have been there. 4 years ago my endo got so bad I couldn't walk or manage day to day tasks in the house. For 18 months I couldn't sit up or drive, my pain was so bad I couldn't lie down for more than 15 minutes at a time, it was really awful. I felt very alone and cut off as I oculdn't work or drive to see anyone.

I asked my husband to work from and he was able to do so three days a week, I called some close friends and told them how bad I was and one of them came to visit me on the other two days.

I looked up a good endo specialists and went to see him. I also paid privately to get an excision op done. While I was waiting for the op I took diclofenac , that helped with the pain.

After the op I could sit and move more freely it took a while to recover but I walked a little every day and increased it by 10 percent each week. I had to stay on painkillers but was able to use just paracetamol and ibuprofen. The pain started to really reduce after about 3 months.I wasable to stop the painkiller s but still struggled when I had my period so the specialist put me on the POP pill which stopped my periods.

I still have pain especially at night but it is at a 1 now instead of a 10. I can move properly ,walk, drive and manage all my daily household tasks. I don't think it ever goes away completely. I still have a lot of endo but I am hoping that soon my periods will stop. This should help. What I am saying is, I was where you are and now I am very much improved.

My life is managable and I enjoy it. Take heart ,feeling so terrible won't last forever lean on your friends, ask your partner for support, most of all don't give up. My GP told me I would always be in horrific pain and I should just "learn to accept it" I did the opposite. I determined I would find out what was causing the pain and that I would do everything in my power to fight it.If I hadn't I would not have even found out it was endo. You have to fight and not give up, don't feel hopeless feel angry and tryto take control. You will feel better after the op but it will take a while. Don't give up life can be better. XXXX

[Endowarrior1807 in reply to Avourneen]

I’m so happy you’re feeling better after your surgery. I suppose one of my biggest fears is, what if I don’t feel better after my surgery…

[Moon_maiden]

Hi

You mentioned the consultant said they can’t remove all the Endo, why did they say that? It seems a bit of an odd thing to say if they know what they are doing.

[Endowarrior1807 in reply to Moon_maiden]

So my case went to an MDT and the report said that there’s a significant amount on my bowel and they won’t be able to remove all of the endo off my bowel. I wasn’t told exactly why but just they’ll remove whatever they can

[Moon_maiden in reply to Endowarrior1807]

Hi

How are you feeling today?

It sounds like you’re with a specialist team if they had MDT. They didn’t say if Endo had gone into the bowel?

How are your feeling about it? I don’t blame you if it’s scary, I’d be wondering what they mean. Have you considered emailing the secretary to ask? Most are happy to find out queries if need be.

I had initial look, and remove some Endo op, then referred to MDT specialist. Unfortunately he didn’t have colorectal surgeon there when he told me he would. Make sure that there will be a colorectal surgeon and it’s not just Gynae. Some Gynae will remove endo from bowel/rectum sometimes depending on experience. You don’t want this to happen as I then had to find another team to remove bowel adhesions. I’d also recommend checking that they will remove all adhesions, Endo or not.

This is your body and you know it more than they do. I got the surgeon the other week to sign off my list on what I was expecting him to do. The look on his face was priceless but he did. 😂

Sorry for wittering on, hope you’ve had a reasonable day today.

[Pennyheart1]

Hi,

Just want to say I’m so sorry you’re going through a tough time with it all. It sounds like you’ve had it really hard and are understandably frustrated and upset by it all. I definitely don’t have all the answers but I’m hoping that the surgery will make a positive difference. It may not solve all of it but surely it will make some improvement.

I had a lap just over nearly 3 months ago. It was hard going the 3 weeks afterwards. First couple weeks and first two periods were pretty awful but third cycle has shown an improvement on pain level and bleeding than pre surgery… so I’m hoping that you too will experience this and that life will become easier and better and you can enjoy some more of the things in life that you want to do. Sending all my best wishes and a prayer your way for a successful surgery and happier days ahead X

[Endowarrior1807 in reply to Pennyheart1]

thank you so much for your kind words. If you don’t mind me asking, do you find day to day things easier after having your surgery compared to before

[Pennyheart1 in reply to Endowarrior1807]

Hi, I’m so sorry in truth I’ve not been on this site since I last wrote to you. How has your surgery gone? Hope you are recovering well??

As for your question… day to day.. I’m blessed that I haven’t suffered all month long…and now - life during periods has been easier last cycle, not a breeze by any means but easier than it was. Hoping this cycle will be similar if not better again. Though having suffered so much in the past I swear it makes us all have pre anxiety as a default every time, it does me. Life has always been planned or changed around cycles as to cope - I’m hoping this will be less now and for you too! X

[Gardenist]

I'm so sorry to hear you feel alone. I have been there. It is a lonely path and can get very overwhelming. It's OK to feel all the feelings. I wish I'd had counselling. I think it would have really helped me and how angry I felt at so much of my life being wasted. I just wanted to offer a bit of hope from my own perspective. It breaks my heart to think back to when I was a teenager and I was told by everyone, including doctors, that everyone has painful periods. I just couldn't understand how everyone else could manage where I regularly was in so much pain I felt like I was going to die. When I was in my late 20s I refused to leave the doctors until they refered me. Finally I had my first surgery. It made things better for a few years. It was such a relief. Im in my 40s now had 2 children and 3 more surgeries and I'm in surgical menopause. It has its own challenges but I feel better than I have my whole adult life. I am strong and resilient for everything I've been through. I would not wish endo on my worst enemy but I love my life, and I've made a good one alongside my unwanted companion. I've learned over time to focus on what my body can do and give myself lots of grace. Nobody will care more than you do about you. Do your best and know that it is enough. I hope your surgery goes well x

[Endowarrior1807 in reply to Gardenist]

Honestly, doctors make this so much worse than it needs to be. If they were more supportive in our teen years, things could have been different now.

I’m also really happy to hear you’ve started to feel better.