I'm struggling emotionally with my severe Endometriosis. I was diagnosed 7 months ago from surgery. The surgery didn't help and I am back to where I started and slowly getting worse with chronic pain and endo symptoms. it's very debilitating. I'm housebound most of the time.
My second opinion specialist cancelled my first appointment wIth him last month because he wanted me to get a DIE ultrasound. He was supposed to consult with another specialist and then contact me. It's been 2 weeks and I called twice, both times they said he was busy with patients and will call me back. He never did. And quite frankly I am beyond pissed off with him and don't have the energy or emotional capacity to keep harassing him for my results and an appointment. I was supposed to be a emergency case for godsake.
I'm due to come off Visanne in 3 days and will eventually have my first period in 7 months. I can predict my hormones will give me a hell of a time and I and everyone around me will suffer for it. I predict it's also going to be very painful. Being so close to Christmas, I'm silently stressing that my hormones and endo pains are going to overtake my body and put me in a painful and emotional state that is not fit for public view. I have experienced something similar right before my endo diagnosis and it was hell.
I honestly am sick of talking about my endo and literally suffer in silence because I don't want to come across as complaining or burden anyone or burst into tears when someone asks me any personal questions, even if they are not related to my endo. I have hidden in the bathroom from family and my partner at times when my pain is bad and tried to cry quietly. I don't like crying in front of people. I was never a cryer before endo overtook my life unless it was related to hormones. I have refused to go to ED When my pain is bad because I have never had a good experience there. I just feel disrespected and not taken seriously and I also hate hospitals.
I have so much anger inside me and it triggers constant tears because I have never felt this much anger and frustration before and I don't know how to deal with it. I've been looking up psychologists in my area who specialise with chronic pain as well as depression and anxiety. I'm willing to go to one to hopefully get some other strategies to help me cope. The only thing is I have had bad past experiences with psychologists, had no help from them and they just wanted to drug me up and send me on my way. I know what is causing my current emotional state, the chronic pain. I just need a therapist to listen and I can have a good cry to without feeling like I am burdening them and I just want some simple strategies to help me cope with this chronic illness while I wait for further treatment. I can only try so much meditation, yoga and creative distraction techniques! They all end in frustration or crying.
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Lejay
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Hi, so much of what you said resonated with me. I kept everything in for years, saying I was fine when I really wasn’t. I’ve done the crying in the bathroom, or into a pillow as well, and then complained that no-one noticed how I was struggling.
After my recent laparoscopy, when I eventually got an endometriosis diagnosis even though I thought I had it for over 10 years, I felt completely overwhelmed and went to see a lovely lady local to me that is a trained psychologist but also does reflexology, meditation and taught me about emotional freedom techniques (look it up on google and you tube) which have been really helpful. It was less daunting thinking I was going to a session to relax rather than to be analysed. It felt so much better to talk about my whole body, not just my symptoms and I cried ALOT!
I’m not sure where you are in the country, I’m in Birmingham and happy to message over her details. Or when she’s back from holiday in January I can see if she has any contacts local to you.
Asking for help is the first step, and although I’m still struggling to open up I have started to find a voice. Take care of yourself x
I went through 4 therapists including one that contributed to a health emergency by telling me I had burn out not a physical health emergency. Thankfully there were others around who over rode that pronouncment. It has also got to a point I could prob educate a few professionals including therapists on intractable pain - and what not to say to people.
This was before finding a lady that does mindfulness. It gives me tools for daily life & flares. She also does some tapping stuff (EDMR). I think ranting can be therapeutic too 😊
My new years resolution is to go get my dose of mindfulness as I am on here reading as today has been a struggle. Best of luck to you on your journey.
Oh Lejay, you poor thing, you shouldn’t keep this hidden from family and friends you need to tell them what your suffering. I’ve had excruciating pain every month and it’s getting worse I’m 47, no kids, I collapsed last weekend with the pain, whole body sweating with the pain, diarhoea, 2 laps found nothing, I’m now on list for full hysterectomy as it’s affecting every area of my life, it’s a big decision, but I can’t suffer like this any longer, big hugs xx
I see a psychologist through a persistent pain service. I accessed this through my GP with the NHS. There may be something similar in your area? I had to ask for a referral and there was a short wait but it has been very helpful and given me somewhere to take my pain, hormones and emotions!
Hands up here - another one that locks herself in bathroom to cry. Can't mention the pain as family sick to death of it. Its a tough road. Sorry you feel this way. I hope that maybe knowing you aren't alone helps a little bit.
2 things I found helpful - first, I hung a punchbag in the garage and learnt boxing. That helps channel the anger and frustration. Caution: Don't do what I did one cold night and throw yourself at it whilst in rage without warming up - back strain combined with endo is not good! But the beauty of boxing training is that it can be done in intense short bursts.
Second thing - I too was referred to a NHS pain clinic. I was scared I would just be told to think happy thought, but it is more than that. They are experts on what happens to the nervous system in chronic pain. Sure, the psychologcal help they offer alongside can't cure your disease, but it can help build coping mechanisms...maybe worth considering asking for a referral with your GP?
I totally get everything that you are going through in the mental state endometriosis can seem like a big ugly poo that you don't want to share with others yet have to suffer in silence. I found listening to podcasts learning about how other people have coped with stress and attending personal development courses and meditation have helped ease my mind and the constant chattering little voice up their. When the mind is calm and not producing stress hormones which agitate the endometriosis symptoms - i find some slight relief. Some excellent podcasts that I would recommend would be Tony Robbins - super inspirational, Wendy Laidlaw - she is an endometriosis survivor who was able to heal naturally (I am reading her book at the moment which has helped massively).
I have also started a gratitude journal which is an app that I take a couple minutes in the day to write down things that I am grateful for however bug or small they are which also allows me to add a nice picture to remember the event. In times of pain and suffering instead of getting angry I try to breathe deeply into my abdomen (despite the pain) and also flick through and relive the experiences of "the good times" from by gratitude journal which in your body produces calming hormones and actually has a chemical reaction to help you feel somewhat better when practiced with conviction and often.
I would recommend watching Heal - a documentary on Netflix which explains how powerful the brain really is.
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