I’m new here. Pain relief tips for severe endo & chocolate cyst please?

[Hencharl99]

Hi all

I’m new here & really sad & frustrated to read how so many women are suffering unnecessarily with misdiagnosis & long waits for treatments. The pain I have experienced is just horrendous & I feel for everyone who suffers such chronic pain

I’ll try & summarise my story.

I’m 47 , have 2 children & Had painful heavy periods all my life. Accepted it as ‘normal’ but for 2 days every month it was excruciating & debilitating. Tried the pill, the coil (horrendous) & eventually had an ablation in January.

No more periods so I was really happy.

In July started waking up every night in agony with severe pelvic pain on my right side. At first intermittent - few bad days & then pain free days. Blood test showed high level of CA125 but ultrasound scan showed clear ovaries.

From Sept onwards the pain became a nightly occurrence. Some nights I had 2 hrs sleep - doubled up with pain. I was literally in tears every night.

My doctor was baffled. Had CT scan & colonoscopy- both clear.

Last week I went to A&E writhing in pain & refused to go home until I got answers

So after lots of tears & insistence I was admitted to gynae ward. Within 24 hours diagnosed with endometriosis- scan showed 5cm choc cyst. Laparoscopy showed severe endometriosis & I woke up to be told that the adhesions were ‘plastered’ over my bowel & fusing my organs together so they couldn’t get near the cyst I was gutted

2 options

1. major surgery - full hysterectomy, ovaries inc bowel dissected

2. injections to bring on early menopause & shrink cyst/ minimise symptoms & HRT tablets

I chose option 2

But I still have the original pain plus the pain from surgery & constipation caused by codeine

Heat pads are my saviour I’ve also tried tens machine but medication wise I just can’t find anything to help the pain. Any ideas for pain relief would be welcome ?

Sorry it’s such a long post - it’s been a horrible long hard slog to get a diagnosis & I just want the pain to go away!

[endokicker1]

Hi,

Im so so sorry about everything you have been through. I know exactly how you feel. I was also diagnosed with endo and it had caused my organs to fuse together that they could hardly see my womb.

Sometimes I wonder how I get up every day and carry on with life. But you too can.

For me, I am still sorting out fertility and childbearing so it even makes it more complicated.

But I am in hardly any daily pain anymore. I had to do a lot of things on my own as the doctors just give you your diagnosis and you are left on your own to deal with it.

First thing I looked at was my diet. There is no one diet and you sorta have to figure out what works for you. But endo causes lots of gastro-intestinal issues so many of us become sensitive to foods like gluten and dairy. The usual suggestion is to exclude gluten, sugar, dairy, alcohol, soy from your diet. Dont feel compelled to do it all at once. One at a time will make sure you dont feel overwhelmed.

Many of us endo ladies are also deficient in some nutrients like vitamin D, magnesium, zinc and many of us are low in iron. So a good supplement is also very important. Also get Omega 3 supplements.

A lot of us also use herbs especially during the period and I have found Yarrow to be the one that reduces my pain a lot.

This sickness is also frustrating and causes stress so try to protect your mental health and reduce stress levels. Sleep at least 7 hours if you can, drink lots of water and just protect your space.

Its a lot, I know but one step at a time. You are not alone.

Please before making any changes to your diet or lifestyle, do your research and speak to as many people and professionals as possible.

Sending you lots of love. xxx

[Hencharl99 in reply to endokicker1]

Thank you so much for your reply. I have thought about diet & will definitely look into it more as well as supplements etc.

It’s so useful to get others advice. I would literally do anything to take the pain away!

I’ve had a good day but dread going to bed as I know the pain will wake me up. Just hoping the injections kick in soon. Fingers crossed. X

[Tantantantan]

Sorry to hear about your pain. As a night time Endo warrior I understand what it feels like to go through this every night. I recommend a second opinion before going down the hysterectomy route as it’s not guaranteed to remove the pain. I tried the menopause injection but side effects were terrible for me. A referral to the pain clinic from your gp or consultant will give you pain relief options. I find tramadol helpful or oromorph when really bad to help and avoid those a&e visits. Codeine just isn’t strong enough. I use suppositories and stool softener to help with the constipation whilst taking these drugs as constipation adds to the pain. Wishing you well on your journey with lots of strength x

[Hencharl99 in reply to Tantantantan]

Thanks so much for your reply.

The pain has woken me up every night for over a month so I dread going to bed.

Sorry to hear you had side effects from the injections. I had mine a week ago, along with taking HRT & haven’t noticed any side effects so far. Hoping that stays the same.

I’ve tried a chiropractor before my diagnosis & it seemed to help as I had so much back pain. So I may try it again.

I will also get a referral to the local pain clinic.

My doctor refused to prescribe oramorph- but in hospital this was a life saver. I may have to beg for it if the pain continues.

Thanks again. Really appreciate the advice. X