Sorry if this is depressing 😞

[Law94]

I feel trapped. I had my laparoscopy surgery in February and I was diagnosed with endometriosis. Since the surgery my pain has leveled up, it’s so much worse and it’s throughout the month, not just when I’m on my period anymore. I feel trapped by this illness, I have maybe one week out of the month where I can leave the house and do normal daily tasks, the rest of the time I’m in too much pain or unwell with other symptoms to do anything. I’m on day three of severe pain at the moment, painkillers don’t seem to do anything. I’m at a point of exhaustion, I don’t know what to do, my GP has said they can’t do anything more I have to wait for my pain clinic appointment. I know I can go to A&E, but I’m too exhausted and in too much pain to sit in A&E for hours on end. I just want the pain to stop, to be able to walk and move without it triggering more pain. Sorry this is a downer I just need to vent these feelings x

[PunkyPeanutButterCup]

Sounds like your really going though it at the moment, sorry to hear this. I know it's not much help but your not going through this alone. Are you trying anything outside of medication to help? I have a my oovi (wireless tens machine) I find this really helps. I also find gentle yoga and simple pelvic floor exercises help, when I'm able to do them. I'm at the point now where I'm open to trying anything holistic just to see if it helps. CBD muscle balm and patches, drinking herbal tea and taking supplements/probiotics or debloat to bring down the inflammation. I'm looking into going for acupuncture aswell. Some of these things might be worth giving a go. Always here if you need to vent, Fay x

[Law94 in reply to PunkyPeanutButterCup]

Thank you. I think it’s time for me to look at things other than medication as painkiller just aren’t working :/ I need to try a tens machine. At the minute the only thing that helps is a hot water bottle, but I keep getting burns. Thank you for the reply xx

[Leahgal]

Hey there! You are always welcome to vent. Sorry to hear things are so hard.

Great suggestions in the other reply around tens machine, gentle yoga and trying other things.

What pain meds are you on as I found some did nothing and perhaps they can prescribe something else?

Have you also tried looking at your diet and trying to reduce inflammation foods? There is a great book called Healing endo which is worth a read.

Hope this helps and you get some relief soon. Xx

[Law94 in reply to Leahgal]

Thank you. I’ve started to look at diet because I’ve heard it really helps some people. I already try to avoid caffeine as that seems to trigger me. I need to try a tens machine, I haven’t yet. I currently take dihydrocodeine and naproxen. I’ve ended up in A&E as pain was getting too intense. Thank you for the advice!! xx

[Leahgal in reply to Law94]

I found dihydrocodeine did nothing for me. I found tramadol was the best for me and the only one which touched my pain. Maybe ask for that? X

[Endofitall]

so sorry you’re suffering. It’s a horrible condition. Did they do excision at your laparoscopy or was it diagnostic only? Pelvic floor physiotherapy (hands on with someone trained to deal with endo patients), diet (gluten and lactose free have helped me a lot as well as low sugar) and using a wireless TENS and heat device have all been helpful for me. I really hope you find relief soon xx

[RosieFalkor]

I’m in a very similar position. I had my laparoscopy in October last year, they didn’t remove any because they found severe Endo all over the place so I had to be referred on.

It’s definitely worsened since then. I have a lot of chest pain now from diaphragm Endo and feel absolutely wiped. Like you I find painkillers make no difference. I tried Amitriptyline and it did help but I didn’t like the side effects at all so stopped.

Things that help me are walking whenever I can, a plant based diet to minimise bowel symptoms and B12 supplements. I hope you get some help soon.

[PurpleSara123]

So sorry to hear this. In addition to all the physical tips recommended in the previous comments, I'd recommend the curable app - it's about retraining your brain. It helps me debunk pain and understand how the body works. I really enjoy their educational sessions and their brain exercises. I'm in constant "not as comfortable as I wish I was" mode (instead of using the term pain, I'm trying to use positive words - it's one of their exercise), and the app helps me when it's too much. Sending you positive energy!

[Sunset-lady]

You need to take a deep breath and take back control lovely. Start with diet. Kick out caffeine and alcohol and gluten to see if it helps. Read as much as you can. Prioritise sleep and self care. Keep a journal to help you. Try to exercise - you don't feel like it but the benefits are huge. Take supplements (start with B vits and vitamin D and K2). Aim to limit stress (easier said than done but sooooo important for us with this disease). Chip away at it until you notice things that help. Good luck xxx

[Welshpearl]

I'm so sorry that you are going through this too. My daughter is having exactly the same. She's just turned 17 at the end of March and had a laparoscopy last October, they found Endometriosis in various places and removed all that was found. We knew it would be slow recovery but unfortunately she says the pain is as bad as before, if not worse. I've been back to the doctor's and my husband recently written to the surgeon as she has a follow up appointment in June. She is on a better week this week but for the 3 weeks before that suffering, she was in severe pain with a bad flare up. I feel so helpless as to help her. I'm not sure what to do next. She has also been on the waiting list to see the pain management team since November and no joy there either, I can't get through on the phone to speak to them to find out when she will be seen even.

[KezMurr]

Bless you, it's so bloody hard to live with a pain disorder, isn't it. I have a couple of inflammatory conditions so I completely relate to your struggle. I really hope the pain eases off for you soon.The most impactful thing you can do which is in your control, is change your diet. Every thing you put into your mouth has an impact on your body, especially those of us with inflammatory conditions. I follow the 'How not to die' plan by Dr. McGregor. Well worth a listen on audible or reading if you prefer books. All processed, sugar, dairy, simple carbs (e.g. white bread, white pasta, etc) and oily foods have to go. Massively increase your daily intake of veg, fruit, nuts, seeds (especially flaxseed) and spices (especially turmeric). Whole grains are actually anti-inflammatory contrary to popular belief that all carbs containing gluten are inflammatory (unless you're caeliac). There's an app to use alongside the book called the daily dozen and the book itself is based only on empirical research. This explains portion sizes and how many of each food item to aim for each day. It has been unbelievably beneficial for me and life changing. The book is a wealth of knowledge. Give a go! There is definitely hope. x

[Tropic in reply to KezMurr]

This is very helpful for me! I’m going to check out the book!

[Tropic in reply to KezMurr]

Question - my recent surgery found no endo. I had my first surgery 3 years ago when they diagnosed me with Stage 3 endo and removed it all. I have been following an anti-inflammatory diet much like you described. With the book that you’ve read, do you think this could be why it hasn’t grown back??

[KezMurr in reply to Tropic]

That's amazing! Massive congrats to you for doing a diet overhaul, it definitely takes some adjusting, doesn't it lol. Once you get into it though, I actually found myself craving healthy foods more and sugary foods less which was bizarre for me!

Your healthy diet will definitely have impacted your body's inflammatory responses (reducing it). Years ago, a dietician really drilled that into me. She was really trying to get me to understand what I put in my mouth is fuelling my body for good or evil (as she put it lol). The 'How not to to die' book brought it all back to me with a hard slap in the face!

For me, I also have rheumatoid arthritis and I notice the difference everytime I have a cheat day. I do these every now and again to keep me sane lol like recently it was my partner's birthdays. Had a few beers (massive inflammatory) and some sugary treats. Next day, I woke up with the RA pain in my hips and a feeling of being aware of my womb and ovaries (you prob know what I mean!). After a couple of days of back to healthy, those pains were gone. I've noticed that pattern alot. Have you noticed anything like that?

So pleased you will check out the book! Personally, I found it really interesting listening to all the published research studies he cites regarding food choices and health. Eye opening. Let me know what you think of it when you finish. Xx

[Tropic in reply to KezMurr]

Oh yes it’s so gruelling. No gluten, no dairy, no sugar, no processed foods, no alcohol, limited caffein. Probiotics and a gut-health drink every morning and tablets that promote good gut health (liver support, digestive enzymes and antioxidants) with breakfast and dinner. It’s a program called ‘Learn to Live Again’ (lol, so lame) and uses Modere products. You can look it up if you like. It got me to the point of no pain and lots of energy but it’s so hard at the start! Like you said though, once I’m in the groove though I don’t crave those other foods. And I enjoy it. For me, the bottle is maintaining it. I’ve been on-again, off-again but it’s still obviously helped! So glad you’ve found something that’s helped you too! X

[E-ZEE]

Hi,Did you have post opp appointment?Push your gp to send you back to consultant.In my knowledge if your gp refer you can get emergency Gyno appointment with in 1 or 2 days time.I had a pain after surgery as well took couple of months to settle down.Use herbal teas and hot water bottle etc.This is a evil illness.Stay strong xxxx

[Tropic in reply to E-ZEE]

So evil!

[Tropic]

Hello 🤍 sorry to hear you’re having such a hard time. What you have described is truly awful. I’ve had surgery recently and prior to that, I too was in constant pain. 24/7. Turns out that it wasn’t endo, it was adhesions that had formed from my first surgery (when they removed all the endo). The adhesions had formed on my ovaries and caused them to stick to other organs - one was stuck to my uterus and the other to the lining of the pelvic wall. Hence the constant pain. Just something to consider. Hope you feel better soon and I echo the other comments about changing to an anti-inflammatory diet, I found that it made a huge difference (my endo hadn’t grown back!) xx

[EmB18]

It is so hard when endo is at a really intense flare phase and nothing seems to work and of course it really gets you down. I used to feel exactly like that too. As others have said it might be worth trying a few different things to see what works for you. I found diet changes made a massive difference to my symptoms. We all react to foods differently, but I found taking out wheat and sugar and adding in plenty of anti-inflammatory foods really helped. Managing stress and pelvic health physio really helped too. Good luck!