My experience.. can anyone help?

[Sophie769]

This is my first post and I’m a little nervous as I’ve never really done this kind of thing of talking with strangers. I’ve had endo since I was young, I’m waiting for my 3rd surgery. This time seems so different to the other times. So apologies in advance for the long post but this is what’s happened so far since Feb

I’ve been admitted to hospital 7 times

I take the following daily.. codeine, morphine, paracetamol, tramidol, anti sickness medication, sleeping medication and laxatives(I’ve been on laxatives since December otherwise I go around 18 days without going)

My stomach swells triple its size

I dropped 2.5 stone since Feb

I throw up a few times a week

I eat bare minimum (less than my 5 year old sister) half an omelette a day

The pain is constant but sometimes gets so bad I can’t do my day to day life and work

I bleed for a few hours every 3/4 days

And this is what the doctors think..

So my uterus has tilted, stuck to my left side wall with all my tubes also stuck

They think the endo is on my bowel

I’m having a camera put down my throat to investigate into my stomach to rule out a stomach ulcer (but they think it’s more that the endo has grown around it)

So I’m waiting for my 3rd surgery, I’m 24 years old, they’re removing my coil when I have the surgery as it’s been awful.

I’ve become so so down the doctors think I’m suffering with depression, I have nightmares about my endo stopping me having children, I sleep 3/3.5 hours a night. I’m trying my hardest to work, I work 7am-630pm 4 days a week, I’m a deputy manager of a nursery so working with children is constantly physical, by the end of the days I’m in agony and that’s even if I get through a day but if I miss too much work I get stressed and worried about money or losing my job.. it’s become a horrible circle.

I just wondered if anyone else’s experiences have been similar, any helpful tips and ideas.. i wanted to get in touch with others that have it and hopefully learn more about what works for others that may work for me. I’ve been told a no meat and dairy diet can help due to the estrogen levels in those foods has anyone tried this, is it true? I welcome any stories and advice!

Thanks in advance

[BrightLights88]

Hi Sophie

I too work with children and manage thr SEN department. I have had 9 hospital admissions since last yr September. I was diagnosed with endometriosis via a transvaginal scan.

My gynaecology specialist had kept me waiting for surgery since december. I couldn't bare the pain, I would only get a flare up of pelvis pain which will make me limp and lower back pain.i then referred myself to a bsge centre in may and now booked for surgery end of the month. I have been put on codeine, cocodamol. cocodamol has helped but I havent had any pain since april. I used to use hot water bottle. l was put microgynon and that has helped a lot. I haven't changed my diet yet.

[ourmolly]

I have had problems ever since my periods began. I always had heavy periods losing clots. I was diagnosed with severe endo at: 23. I also lost blood from my bowel on a regular basis, with clots. It was like having a period from my bowel. I had a hysterectomy at: 28, due to my endo. But I still kept losing blood from my bowel, which I still do at: 64 years old.

I also suffer severe back pain. I have been on morphine. But I am now on: Gabapentin and Matrifen patches which I have been on for many years along with other medication. I am in a wheelchair when I am out as I cannot walk far due to my severe back pain. I had a Spinal Cord Stimulator fitted 5 years ago. It should have been a 2 hour operation, but turned out to take 6 hours. I had over 80 staples in my back and 12 staples in my side. Plus I ended up having Sepsis.

I suggest you stress how much you are suffering to your Consultant and Doctor. Do not suffer in silence.

[Sophie769 in reply to ourmolly]

Wow! Sounds like you really went through it!! I’ve had bleeding from the bowel too but not as bad a yourself! Yeah I’m having an upper endoscopy on Thursday as the pain medication has potentially cause a stomach ulcer or the endo has stretched to that point but surgery with the endo specialist will be at least 3 months wait! Was there anything you could do (apart from pain meds) that help relieve your pain? I find standing start very very hard!

[margaret89]

Hey, sounds like a horrible time, I’m sorry you’re going through this.

People here are right, you absolutely have to make sure your Drs know what’s going on and the extent it effects you.

Mentally you need to look after yourself too! Break your circle. Easier said than done but the longer it goes on the harder it will be. Counselling, acupuncture, yoga, meditation - try it all, can’t make it worse!

Sending you best wishes x

[margaret89 in reply to margaret89]

Oh yeah, I find more fibre helps my endo... not sure why? X

[Sophie769 in reply to margaret89]

I have indeed been stressing to the doctors every week. Having an upper endoscopy on Thursday to look for a stomach ulcer however they’re not sure if it’s actually endo causing it!

I haven’t tried meditation or yoga.. do you find classes are best or alone? Is it easy to do when in pain?

Change in diet is something I am considering to help but with food not staying down it’s been a struggle!

[ourmolly in reply to margaret89]

Having my hysterectomy at: 28, stopped my periods, but it did not stop the rectal bleeding, as my ovaries were not removed because of my young age. I do feel I have suffered all of my life. They could not do a bowel operation as the lining of my bowel was very thin. Every time something touched my bowel it bled, fresh blood and clots. Like you I eat very little. I cannot go out for a meal as every time I start eating my bowel starts to bleed, leaving me in pain until my bowel is empty.I suppose the rectal ulcer does not help. All I can suggest is to keep on at your GP and Consultant stating what you are going through. I was sent to different Hospitals as they had not dealt with anyone with the problems that I have. I also suffer from severe back issues. I have a Spinal Cord Stimulator fitted. This should have been a 2 hour operation, but mine ended up taking 6 hours, as my spine had altered. I needed over 80 staples in my back and 12 staples in my side. To add to that I ended up with: Sepsis. Hence, I have been on a huge amount of medication for over 20 years, including patches for my pain. It is difficult to accept that my life has totally altered because of my problems. I hardly ever go out, I need a wheelchair, plus I am limited with eating as it makes my bowel and stomach worse. I have loads of Polyps in my stomach, I don't know why. Life is not easy. Just press on and try and get help with your problems.

regards, Della.