I write this post as a call our for guidance and help I guess. My very first attempt to reach out to someone who can relate or help in the process of handling/ dealing with what comes with the WORST of WORST endo days.
I've genuinely no one to talk to on the matter barring my poor, poor 'he knows' and he really does. It's breaking my heart, seeing it affect us as it is. especially when my bad episodes flare. Work, social and family life all becoming a struggle.
I was diagnosed with severe endo 10 years ago. With a history before that of CIN level 3 of the cervix. Also from 15 unbeknownst till my early 20s a hormone imbalance. Resulting in PMDD.
Following x2 lap ops, x9 bouts GNrH (which has left me with bone issues.) Mirena coil. Every pill going...To absolutely no avail.
Here I lay in agony, (Again) Ripping myself to pieces with guilt. As my fiance tries to settle.
It's the monthly alternate side pelvic pains that are messing me up physically and my mental state is taking a bashing.
Feb 11th 17 was the last time this happened. NHS 111 said I should go to A&E.
Scans confirmed rupture of cysts, shadow of uterus and possible bowel fibroid.
New specialist won't do anything major either as I'm under 40.
I just want to be the vibrant confident woman my fiance fell in love with all those years ago. The woman whom up until x3 years plus my fiance wasn't afraid of being intimate with me.
I can't move, my bellies bloated severely. Constant Clear fluid discharge. Im stressed to max with worry, guilt, and the lack of my beautiful man's touch even when at my best? Stir crazzzzzy with him not engaging.
I've probably put down far too much here. I really needed to do this.
Life's becoming overwhelming, my close others (friends, colleagues, family) lives forced to my attention with utmost priority.
Hellllpppp...lol
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Tulip081
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Shame didn't like to read and run, you sound like you having a right 💩 Time, have yo tried any painkillers from gp, hot water bottles, heat patches, tens machine, tiger balm, is there any support groups near you? Anti depressants? Here if you need to talk xxxx
hi. How are you feeling? Even with support from family and friends nothing beats talking to people that are also living with this disease. Do you have regular pain management? Hope you found them helpful at a&e, I was taken in recently and they were brilliant but not everyone has a positive experience.
the guilty feeling is hard to deal with and the stress it puts on our loved ones is hard. Have you spoken to your lovely man about how you are feeling?
is the new consultant you mentioned a endometriosis specialist at a bsge centre?
as mentioned a hot water bottle, hot bath and gentle stretches can sometimes help ease pain. are you aware of the Endo diet? It's help reduce some of my pain and if you want more information on it I'm happy to share what's worked for me.
this disease is hard to deal with and is overwhelming but forums like this are great for getting advice and what helps different people.
Big hugs, no real advice but to empathise as I am experiencing a lot of similar relationship side effects to you, with my wonderful hubby though my symptoms are very different.
I hope you can find a bsge referral given the duration and severity and hopefully get some more proactive surgical or pain relief clinic support from a dedicated endo team. X x x
Hi tulip what area do you live in and where have you been for treatment?
The consultant who did my op in June 2015 (after a long battle with gp and refusing my regular ob/gyni half hearted offer of another lap) I did my homework and found the most amazing consultant in the southeast whom was the first person to actually listen to the words coming out of my mouth and genuinely cared and wanted to help.
My point being if your not getting any joy from your current consultant you MUST look for one whom will work with you to get you back on track it's your body your life and your right to choose.....
If you would like more details private message me as I'm not allowed to name consultants or hospitals on here and I can also point you in a highly recommended direction of more support and help.
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