Options post-op (endo excision)

[SwedishCoffee]

Hi all! I am at a cross-roads and looking for some thoughts and experiences of treatment plans post-op. I had excision surgery in June 2023, which the doctors deemed "successful", however it has had absolutely no effect on my pain. In fact, the pain has gotten worse with new symptoms appearing (right lower back/hip pain to where I can't stand on my right leg sometimes and also pain to the point of fainting).

I have been told that my options are neuropathic pain medication (I tried one type last year and it was a-w-f-u-l, I got all of the side effects and it also triggered rosacea), or hormonal treatments. I don't feel comfortable with any of these options because of the side effects. I have spoken to/read about/personally experienced these terrible side effects so much that I have no trust in these treatment options. I feel so lost! I'm also starting to wonder if maybe all of my symptoms are pointing to another condition, which I've raised with the doctor but no one will look into it.

I am wondering what other people have tried for endometriosis post-op that has actually worked? Are there any positive stories out there? Or, if not, how did you advocate for yourself? Was there another condition that came to light after your operation?

Thank you so much in advance!!

[Tangoandmax]

Hi, I had a successful surgery in August and continued to have pain. Due to location of the exercised endo, walls/ligaments my consultant strongly recommended nerve pain meds, and so I started pregabalin thinking it would prove useless. I’m pleased to say it’s really helped me. I struggled to sleep with the constant lower back/leg pain which has mostly stopped unless I’m having a flare up (ovulation). And when walking for any extended period of time.

I was also referred to a pain management clinic. I’m yet to have this appointment -another waiting list situation.

Is it possible for you to give an alternate nerve pain tablet a go, I think there are a couple of them. I became pretty desperate and willing to give anything a try due to my limited quality of life and I’m glad I did, it’s drastically changed my outlook/physical capabilities.

[SwedishCoffee in reply to Tangoandmax]

Hi, thank you so much for sharing your experience. I'm so happy that the nerve pain meds have helped you - that's brilliant news! That's really good advice. I'll do a little further research into the different kinds of tablets and see if any of them sound okay. Thanks again!

[635703]

So….post lap I had a gnhr analogue injection so my body could heal and I could have a 3 month break from periods. I had a Mirena coil put in and that gave me 16 years or so of very light periods, panty liner light.

Now, several years later, I have Crohns disease and am bowel and bladder incontinent. I have nerve damage to the Trigeminal nerve in my face. So, a neurologist prescribed amitriptalyne. It’s an old style antidepressant but 10-150mgs is a nerve blocker used for chronic pain. It just so happens to help with Crohns and Endo pain. I have had bad nerve pain down my legs with limping and dragging my leg, years ago. It went post lap and that time (early 00’s) I was given ablation not excision. The Endo and leg pain came back but I think the amitriptalyne took the edge off. Second lap with excision took it away.

My Crohns diagnosis was acute rectal bleeding, to A&E by ambulance, colonoscopy and calprotectin and biopsies confirmed Crohns. So I had no idea, thought it was bowel endo.

I don’t know if any of this helps you? The amitriptalyne was taking 6 weeks to get into my system and making me drowsy. I took in 1 hour before I wanted to sleep and thankfully it knocks me out. Started on 10mgs and I’m now at 80mgs but benefitting still.

2 weeks ish post laparoscopic total hysterectomy and feel fantastic. The malaise we get with Endo has gone. The post op recovery has been no complications, so far. The pain was nowhere near as bad as my period used to be. No leg pain so far. Just tired as I recover. Sending hugs if you like them 🫂💞

Also, I have seen a Pain Management Consultant and have a Medical Psychologist and we do ACT (Acceptance and Commitment Therapy). I have cPTSD from childhood and medical professionals treatment of me around Gyne stuff. I take diazepam for my medical appointments.

I hope this helps in some way? X

[SwedishCoffee in reply to 635703]

Hi there. Thank you so much for sharing your story and letting me know what helped you. I'm really pleased to hear that you are feeling better after your lap - I wish you a speedy recovery and all of the best for the future! I will certainly look into some of the medications/treatments you mention to see if they are a good fit for me as well. X

[635703 in reply to SwedishCoffee]

Thank you so much 🫂☺️ I’m actually now 4 weeks post laparoscopic full hysterectomy. In my case, it was the best option for me. Post surgery the pain was nowhere near as bad as the Endo pain before this major op!!! Nowhere near and lap pain either. I was so worried by horror stories. But everyone is so different. I think that’s key to remember for all of us 🫂💐 xxx

[Yogi04]

I've been watching a lot atm on alternative medicine and acupuncture seems to be quite successful for the pain, also work on the mental emotional side of things like breath work and all of those alternatives that can just help calm your body down in flares cus when everything tenses up it's a viscous circle....it's not as easy as just breathing it's a journey and I think the only one is holistic and food....I'm not successful in this yet, I have moved back with my parents to have some support because no pain meds work, the pill is making me crazy and surgery I'm trying to avoid because I've heard so many stories of it being worse so really going in to alternative more 'eastern' style medicine. Good luck and courage to you, it's so exhausting and debilitating!

[SwedishCoffee in reply to Yogi04]

Thank you for your message, and I am so sorry to hear no meds are working for you either. You're right, it really is exhausting and debilitation, but it's so nice that we can come together as a community and answer questions/offer support. Thank you for your perspective, and I'll definitely be looking into some alternative medicine. Good luck to you too!