Diagnostic Lap shows no endometriosis. Fe... - Endometriosis UK

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Diagnostic Lap shows no endometriosis. Feel like screaming. Not sure what to do next as this chronic pain has to from something.

Jo0410 profile image
9 Replies

I have had painful periods since 11 and went on pill at 16 to stop the cramps and heavy flow. It did a good job until I came off the pill at 30. Always had bowel symptoms before, during and after periods. Like really bad cramps and loose movements. Sometimes that is worst than even the period pain.

Anyway at 30 had a query miscarriage and ever since then I have been investigated for bowel pain, bladder pain but they finally decided it was gynae related and gave me the label of endometriosis. For fifteen years I have been waiting for a proper diagnosis they always just worked on the presumption of it rather than just making sure. I have had three lots of 6 months zoldex starting in 2005 and those helped.

I'm 45 and never been able to have children, not sure if it due to infertility as never had it investigated. In last three years I have gone months of heavy bleeding with no let up. Taking a week off each month from work due to the chronic period pain and bowel symptoms.

I had a hysterscopy last year where they fitted a mirena coil which has helped with the flow situation but ended a having a pelvic infection for months after. I already know I have fibroids but they never discuss removing them. Smears always been okay but they are always extremely painful as my utersus is tilted and they always use the wrong sized instrument.

Finally they decided to do a laparoscopy in Feb which I had on Thursday and the consultant who was different to the ones I have seen through the saga said I had no endo and no need for follow up. I'm so frustrated that they are leaving me like this, clearly I still have something wrong to have all this pain every period. I'm wondering if i have the kind that is deep in tissue rather than on surface or is so small they can see it.

The consultant came to see me when I was groggy said I had a bulky ovary and something bulky on my bowel. She didn't explain what that meant. Nothing is mentioned about it even on the discharge summary,

I work in NHS and so frustrated. I am making an appointment with my gp who is so supportive to find out what I can do next. I wonder if I need to see a endo specialist at one of these centres I have been reading about. I really don't know what else to do.

9 Replies
Jo0410 profile image
Jo0410

Also consultant did say I could be referred to chronic pain clinic but wasn't something she organised with my discharge so another thing through my gp. Also she was supposed to give me a sick note for a week recovery and didn't. So had work hassling me to come back after one day sick.

Patricia2015 profile image
Patricia2015

So sorry to hear your hardship!

If you say you bleed more days then only your menses I am quite sure you have adenomyosis which is endometriosis interna. That can be seen on ultrasound by a good gyno or on a MRI.

Medicine Esmya helped me reducing my adenomyosis.

You also might have deep infiltrating endometriosis (DIE). That is also visible on MRI.

I have both adenomyosis as DIE and currently awaiting first appointment at BSGE centre end of August.

I had two laps before where they didn"t find the Adenomyosis nor the Endometriosis.

I am 42 and just like you not been able to have children.

Keep in there, keep strong!

dawntildusk profile image
dawntildusk

Hi Jo. Unfortunately it is a common story if your lap was done under general gynae. If you read my history i was in exactly the same position. Ultimately if your symptoms persist then further investigation needs to be done. An mri would be ideal. I wouldnt be surprised if the fibroids arent contributing to your symptoms also but im not a dr. Dont let them fob you off! Only you know your own body!! Ive had a hard time being told i had stage 4, then told theres no endo or anything, then stage 4 again. I only got further treatment because i persued it myself after joining this site and learning more about the condition. I am now waiting for a hysterectomy.

dawntildusk profile image
dawntildusk

i would ring your consultants secretary and insist on a follow up to discuss your results and further investigation. I would definately want to know what bulky ovary and bowel means. Its an indication that something isnt right as it would just say normal otherwise!

Jo0410 profile image
Jo0410

The problem is the consultant said this verbally when she came to see me in recovery but its not mentioned at all on discharge. Says pelvic view was normal. 😡 So confused i know i didn't imagine her saying it while groggy coming around from anaesthetic. Im going to go see my gp and see what she says see if she is willing to organise an mri for me. I might wait alittle while and do a pain diary as never done of those.

dawntildusk profile image
dawntildusk in reply to Jo0410

hiya. how r u feeling? did u manage to see your gp? hope uv been resting!!!

Jo0410 profile image
Jo0410 in reply to dawntildusk

Yes doing much better, healing ok still slightly sore. I had a telephone call with one of the gps at surgery and she signed me off work for another week so that will be 10 days rest. I think I should be ready to go back on phased return then just doing 3 or 4 hours of work. I only work part time anyhow. I have an actual face to face appointment with another gp on 10th July to discuss further the way forward. Thank you for taking time to ask. Will keep updated on what they think I should do next. I'm going to bring up about the bulky uterus etc. One thing I have been suffering with was vertigo but think gp said just to rest longer and that seems to have worked.

dawntildusk profile image
dawntildusk in reply to Jo0410

Glad you are feeling a bit better. Just listen to your body and only go back when you are ready. Keep your eye open for an infection so if u start to get any other symptoms like a fever or redness around your wounds it might be worth getting checked out. I started feeling dizzy then other symptoms appeared, turned out to be an infection. good luck with your next appointment. make sure you write your questions down. take care x

dawntildusk profile image
dawntildusk

i had this problem too where i was told one thing after surgery and then another in notes. i really wish i had followed it up immediately after to get corrected or clarified as all subsequent appointments will just go off the notes. speak to your gp about it. they may offer to ask on your behalf. if not u should contact them direct x

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