Help, no-one seens to know what wrong with me! Dermoid cyst, endo or chronic pelvic pain

Hi everyone, this is very long winded but I am desperate so please read and tell me what you think.

I have had problems with periods for around 13 years and bowel probs. Had bowel checked at the time & all OK.

Saw gynae after passing a huge clot, told could be endo, decided to see what happens and managed to get pregnant.Lucky to have beautiful little girl.

Then had worsening monthly pain and really bad right sided pain along with pain in front of thigh (like being in labour, doc thought caused by back so given ibuprofen, tramadol and co codamol) went off after 3 days but still left with some pain and back pain on and off. Went on pill.

Had 1st lap,removed a twisted dermoid cyst on right ovary 2 years ago, the ovary was left in place. Also had very bad adhesions, womb stuck to bowel, in surgery for 2.5 hours! Told dont have endo.

Recovered from that but still had pain on right side and down thigh.Asked for second opinion.

Had 2nd lap 1 year ago. Removed adhesions, cleared tubes etc.

Still have same pain. Gynae said i PROBABLY have endo but he doesnt think that is causing my pain and I am a mystery!! (thats a big help). Then talked about pain management.

I was desperate, went for private MRI which showed another dermoid on same ovary which is stuck to bowel. Also said some "signal changes" that would suggest likely endo. On list to have 3rd lap to remove cyst and right ovary.

This has now been 3 years in total, cant work, cant get pregnant cos taking tramadol daily (have been since last op in June 2011). No-one seems to know whats causing my pain!!!

When endo becomes advanced with dense adhesions is it possible it's there deep inside and he cant see it? I have read this may be possible, the adhesions must have been caused by something!

I have all symptoms of endo, even down to feeling cold all the time, low immune system. I just had 6 months on prostap with hrt, stopped monthly pains, pmt etc but not this other pain that never goes away.

Have also had physio, seen chiropractor, had nerve tests,all private with no income, running out of things to try - the pain cant be anything else. Have tried amatriptaline in case nerve pain - didnt help.Could the pain be down to adhesions?

Any ideas anyone, please help!!! Cant take much more and considering hysterectomy, 39 now, but would like another child, running out of time.

Sorry its a long post but it's been going on for a long time!!

Thanks x

4 Replies

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  • I recognise some of myself here and I would suggest two things:

    1. Try to step back from your desperation just for a little bit and try some mindfulness meditation and/or relaxation therapy. It will buy some time and you will be surprised to find that the pain is a little better, more bearable and you are in a better situation to know what to try next.

    2. Don't rush into a hysterectomy because you may still have pain after, plus additional problems from the surgery. You may still need to have one but make sure you are left with no other options.

    And remember this will not last forever - you will find the answer but stay calm!

  • thanks for the reply, it's good advice. I have read that stress affects pain and I know I certainly feel it more if I am tired too. I feel like it will last forever as it's been there for so long, hopefully the next lap will help otherwise I don't know what's next. it's amazing to read so many others are going through similar things and good to know there is help out there x

  • There are many other meds to try, mention to your doctor, these helped my pain, it's tolerable now and I can work and raise my sons. I have undiagnosed chronic pelvic pain, pelvic floor dysfunction, muscle spasms. I take nortriptyline 45 mgs, takes a few weeks to work, flexaril, which his a muscle relaxer before bed, alprazolam witch is an anti anxiety med, it relaxes everything,magnesium, flaxseed oil, tons of water, healthy diet, high protein, low sugar, relaxation techniques, walking, any distraction, research holistic approaches to chronic pain and learn how the mind and body communicate. I take tramdol with two ibuprofen when I get my period.

  • Hi, sorry for the late reply, thanks for taking the time to reply to my post. That's interesting info and I will take a look at the meds you mention. I think nortriptyline is similar to amitriptyline which does seem to help me but the rest I hadn't heard of x

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