Finally have a date for the 7th of Aug for my laparoscopy, after a year of pushing, A&E trips and doctors vists. It's getting to the stage where I am at the end of my tether, with symptoms becoming progressively worse.
My symptoms started around 2 years ago. Painful and heavy periods, excruciating for the first 2 days. The pain would have me pacing, curled up and crawling along the floor. I would mask this with a hot water bottle and prescription painkillers.
Up until around 1 year ago, sex became painful, strange bowel movements, stabbing pain in ovaries and constant back and pelvic cramping/pain. This became unbearable, with several trips to A&E, the doctors and out of hours. STI test clear, ultrasound clear, urine sample clear. I was told muscular pain, heavy periods and that in other words, it was psychological.
Recently, my periods have been excruciating with clots the size of my hand (worrying and unusual for me) . Stabbing pain in my ovaries have become constant with no pattern and nerve pain down one leg. Constant tummy cramping, also with painful bowel movements. I'm also having to strain when urinating. Not to mention the fatigue, I cry with tiredness most nights! Also, weird one, constant heart burn and nausea. When reporting this to my doctor, she was clueless and referred me to gynae for the heavy bleeding.
The gynae (very blunt and dimissive), basically stated that I had nothing wrong but would refer me for lap to purely 'ease my mind'. LADY I AM NOT CRAZY, something is not right and my pain is very, very real and debilitating!!
Hopefully and finally I am now able to get some answers. I am now worried that I will have my lap and they will find nothing. If they do find endo, I think I will feel a sense of relief, not that anybody wants endo. I will be happy that we can move on with treating whatever 'this' is and finally be able to move forward with a plan.
Please wish me luck folks!
C x
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dogdaft
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Oh you poor thing. It's so bloody (excuse the pun!) frustrating! You clearly have a lot of endo symptoms. That gynae must have horrific periods and symptoms if she thinks what you describe is normal!
You are most definitely not alone in being treated this way. I had a very similar experience 2 years ago but with less obvious endo symptoms (my periods are fairly light & 'normal'). The gynae also said to me she would "refer me for lap to purely 'ease my mind", like I was just anxious and wanted to go through the joys of surgery just a way to chill out! That lap actually didn't find any endo but now, 2 years later, I had an mri through orthopaedics due to my chronic back/hip pain and they found severe endo throughout my pelvis. I'm sure you can imagine, I've been rather angry about it! The last 2 years I've just accepted it is all psychological. From what they're saying it's not really that bad around my reproductive organs but mostly around my bowel and back so I think they just checked the usual bits and gave themselves a pat on the back for being right.
I hope you get your lap quickly & it can direct you towards something that will help. Definitely don't accept this message that periods should be painful & it's normal. You know yourself it's not right, I'm a full believer of trusting your instincts and listening to your body. I've actually found a lot of of benefit from going to other types of practitioners and healers so if you're getting nowhere with the medics, there's still a lot of help available to you.
Oh and fatigue is my worst symptom, I know that feeling all to well. Sometimes I'm so tired that it's actually painful. My advice is to not try push through it. I did for 3 years and I feel it made me a lot worse. Your body needs rest. The difference when I look at after myself and listen to my body is amazing.
The whole thing has just been so stressful, emotionally and physically. I think that not being able to label what is wrong with you really does take its toll.
I can agree that my last period really did terrify me! As women, we absolutely know our bodies. We know when things just aren’t right, or have changed. I really feel like many health professionals think we are hypochondriacs. The one thing I have taken from this whole thing is that is so important to be an advocate for your own health and to fight for answers.
That’s something I’m definitely scared of. I’m worried that they don’t have a good dig around. Surely I can’t be having all these crazy symptoms for no good reason?! All I know is I absolutely cannot go on like this..
So glad that you now have answers, it must have been absolutely horrendous not knowing. There really is nothing worse than thinking that it’s all ‘in your head’ or psychological. It’s worrying to think that if you never had that MRI, you would still be none the wiser. I hope that treatment is going well for you and symptoms are as minimal as possible. It sounds like you are quite an amazing lady!
Awe thank you for your kind words. I have actually taken a lot of meaning from the 2 years I was in limbo. I'm glad I now know but in some ways I'm glad I've had the time of not knowing because I've learned a lot and I'm some ways I've been given the chance to see my life was really not right. Because I've got so I'll, I've had to stop everything, leave my career and just stop doing everything. I can see how much I really needed to do this, otherwise I was at risk of unhappily working in a job that was killing me until I retired/died. What a waste of a precious life that would've been! I'll be having surgery soon and hopefully I'll benefit from it and I'll be able to carve out a life that more suited to me. In some ways, it feels like I've been lucky. I was in no way this spiritual 2 years ago so I think I needed this lesson.
Although, I'm still angry at the way I've been treated and the way so many women with endo and undiagnosed endo are mistreated by the medical world. Maybe once I've got energy I'll become a endo rights campaigner! ✊🏻
It’s so amazing that you’ve taken this lesson and learned from it in such a spiritual way. You are nothing short of amazing tackling such a horrible and debilitating disease with such an inspiring attitude.
Glad that you are giving yourself the time that you need to heal. How is everything else going to fall into place if you are not yourself? At the end of the day, not to sound too morbid, we are all heading to the same fate. It’s good that you are prioritising yourself and giving yourself the best quality of life as possible. If you sort your health and happiness first and foremost, everything else will follow. Here’s hoping your next surgery is successful in reducing some of your horrible symptoms and you’re able to focus on some other aspect of your life, strong lady!
I think that it’s truly amazing that women can support each other during such horrible experiences. It’s so important to surround yourself with kind people who listen, most importantly to keep your own sanity!!
Women should be building each other up, instead of all this crap you see on social media every day! This is why I love this forum, nothing but kindness and advice for other women suffering.
Just got to keep the faith. It’s not been easy but a little faith and positivity go a long way. It doesn’t mean that I amn’t a right moan when things get tough! Cause, who doesn’t like a moan, right?
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