I'm new here long term sufferer that needs help!

[louly116]

Hi Guys,

First time posting here and I have been thinking about it for a while.

Its going to be a long one I'm afraid but I guess its kind of a way to get everything of my chest so I don't feel like I'm suffering in Silence.

I have now had Endo since October 2015 and have had 3 operations since then.

My first one was in October 2015 after being in the worst pain I have ever been in in my life (at the time anyway).

Second was September 2016 just after my 21st birthday and thirdly July 2017.

Every time I have been in hospital for over a week and all operations have been performed as emergencies.

Other than the operations I have been in hospital with pain over 25 times in less than 3 years.

No pain killer really touches the pain and I have been prescribed tramadol, codeine, oramorph etc.

I had the coil fitted in my last operation. with hopes of improving my symptoms but have actually now been in pain every day for the last 9 months while still having episodes of agony and being admitted to hospital. Its actually ridiculous that all the nurses on the Gynae ward know me by name.

I feel like I suffer every day. I hurt morning noon and night. It hurts to pee hurts to poo and I definitely can't have sex!! That is a big no no! I have put on well over 2st since my first surgery and it kills me to exercise.

I just feel lost. Really lost and like Im not getting anywhere. I am 22 and have been going through this since just after my 19th birthday.

This is going to sound ridiculous but I still haven't seen the endo specialist as I have been waiting for so long each time (Even being referred as an emergency) that before my appointment I end up in hospital again.

Not only do I have endo but I have a fibroid in my cervix and a tilted pelvis. My right ovary sits too far back so every time they operate they have to move it out but it always goes back into the wrong position. And now not only is my right ovary fixed but also my left.

I just feel lost to be honest with you and just wondered if anyone was going through similar or what they have done to get answers or anything that helped. I know everyones case is different but I just don't know where to turn to.

Thank you so much guys! xxx

[PCollind]

So sorry to hear about your suffering and so much pain at such a young age. I think you need to get a second opinion honestly speaking if you are unable to even see ur doctor. Also I think you need to try yoga and meditation with natural remedies. I also had lot of problems and somehow my body doesn't respond well to drugs nor do they have the desired results. Hope you are able to find a solution earliest. Love and hugs.😘

[ThaliaThalia]

It sounds like you’re having an awful time. I’m so sorry you’re going through this. Please know we’re here to listen to and to support you.

Living with chronic pain is extremely challenging given how painful endo can be. I’m symptom-free now but I was previously bed-ridden most of the time. I’ll give you all my best tips in the hope that something works for you.

Are you able to speak with your G.P. to explain how much this is affecting you? There may be stronger pain meds to be prescribed. They might refer you to a pain clinic and they can write to the hospital to expedite any endo appointments. In addition to that, here is how I became pain free.

1. Switch to the endo. diet (Google the Endometriosis Diet and all the diet advice comes up). This is the most effective thing I’ve tried.

2. Gentle exercise if possible (even if it’s just a five minute slow walk in nature). It will stave off pain-related sadness and it also helps lower inflammation which is the key to reducing symptoms.

3. Good quality fish oil to reduce inflammation (I like Nordic Naturals)

4. Try a multivitamin with minerals & antioxidants (I like the Pharma Nord one)

5. Pain meds and hot water bottles

6. Be really kind to yourself. This is a painful disease.

7. Reach out on here any time you need support. You’re not alone with this.

I’m proof that there is light at the end of the tunnel. It helps to have a G.P. fighting your corner so please do ask for their support.

Hugs. x