I need some advice..

[AdeptTurtle]

Hi everyone,I'm new here, so hello community.

I was diagnosed with endometriosis in 2017 I was 17, I had my first laprascopy and they removed around a stone and a half's worth of endometriosis from my body. It was wrapped around my womb, it had attached to my nerve in my hip up the ride side of my back and onto my lungs.

3 years later in 2020 I had another operation due to a continue in symptoms and the pain being agonising. I had adhesive scars that had fused my lower abdomen organs together and to my spine, that was separated as far as I'm aware.

Recently 4 years later, there's been things I've ignored thinking maybe it's because of scar tissue or something else. But I've had a burning pain in my hip and up my back. My bowel movements are so painful and I now suffer with constipation a lot, bloating a lot and pain when I need to pee. A few days ago I had the worst period I've had in a long time and was bed ridden cause I couldn't walk, the pain made me sick and I had to go on laxatives as my bowels to me felt blocked.

My partner doesnt really seem to understand and yells at me for taking time off, my doctor said It could just be constipation. I'm so infuriated I don't want to be dismissed again and again and again it reminds me of when I had to go through years of pain for my diagnosis. I don't know what to do, I'm too anxious to push, I can't talk to my bf about it.

[BloomingMarvellous]

Hi Hun

First , It is an issue the GP should refer on back to the endo specialist and not hold you back. Be clear and don’t wait for them to offer this as an option and directly ask for an urgent appt. If they won’t I would raise a complaint via your practice or PALS. You could also just go back to the specialists secretary and try to get an appt that way without further conversation with the GP.

Next, I don’t wish to offend or criticise but your partner’s response isn’t helpful. That you’ve written about it here seems that you are trying to get your head around it and some perspective . You are raising a red flag. 🚩 You may well not want to contemplate what I write next and I get that but I wish someone had said this to me years ago and saved me alot of pain and heartbreak. This maybe they have reached the end of their tether but need help in coping or something more worrisome. You need to be honest with yourself about which it is and what you deserve.

Many partners struggle to understand the ramifications of this disease but don’t try to control what you do to manage it. While they might be concerned about finances and worried they need to be both kind and respectful of your needs. They may need to adjust their expectations of you and the relationship. This response makes my blood run cold, that it’s more about their feelings rather than your needs. They clearly struggle with self awareness and a wider perspective here. Bluntly, it feels deeply wrong, even abusive and no one should have to encounter that, whatever the circumstances. I maybe wrong here on this one but if you are writing about it here I would ask is this the only time or sphere in which they become like this ? Often when we take time and step back it’s not the only time. If that’s the case you have to cherish yourself and face the problem and what you can do about it.

It is a rare person that transforms such reactions to worries and becomes understanding and compassionate . I would never want to say never but ….Try not to fool yourself that if you try harder / get well / stand on your head / become a unicorn …it will change. Accept who they are. You can’t expect even with constructive explanation and clear boundaries that their fundamental behaviours will change . Only they can do their changing. We can’t control what they do, only what we do. Boundaries.

You could try counselling so there is a safe meditator, but I would still have massive concerns that somehow when you don’t come up to scratch in their eyes that it becomes a reason for them to be controlling or shout. It’s unacceptable. It can be tough to face these things especially when we are sick, but don’t expect to be able to put it aside and it somehow magically resolve itself. It’s not good enough ; be kind to yourself and put yourself first.

Too often we are “ shamed” into keeping this quiet or to ourselves . These problems need air so they don’t grow, they feed on silence and isolation. There are loving and kind partners out there , they may struggle but they share that with you and find support to help themselves to navigate the issues.

Ask yourself why you are sacrificing your needs on the alter of their priorities ? For what ? You may have shared home, children and other pressing responsibilities but you are also unwell with a chronic condition that isn’t about to disappear. Your needs are just that and they have no right to assert otherwise.

Perhaps you could discuss this with trusted family, friends and a domestic abuse support service ? It’s often the case that unhealthy behaviour in relationships creeps up on us and we turn a blind eye to it because we feel unable to acknowledge it. When one of a partnership is unwell it’s all to easy for the other to take advantage of their vulnerability. Stress in and of itself feeds endo so this isn’t solely an issue of your relationship but your disease itself.

[Purple_Badgers]

Hi AdeptTurtle, I’m so sorry this is happening to you. What a huge amount of pain and illness you have been through from a really young age.

I second everything that BloomingMarvellous has said, she has absolutely hit the nail on the head (in a wonderful, gentle and tactful way!)

My first thought about your partner was something much more blunt eg “Bin Him ASAP” as it is never acceptable to be yelled at for being seriously unwell and unable to leave your bed, let alone to leave the house and go to work.

You deserve extra love, support, understanding and admiration from a partner. Someone who will ask what you need and insist that you shouldn’t worry about work until you are feeling better. Someone who will listen to you describe all your problems and ailments with care and sympathy - yes, including the yucky or embarrassing stuff!

Relationship troubles aside, it looks like you will have to do a little “yelling” of your own to be heard by the health services. You are a known severe endo sufferer. You have had several serious surgeries for this horrific condition yet still have reoccurring / worsening symptoms.

I know from experience that “just constipation” when you have severe endo can actually turn out to be a dangerous constriction of the bowel due to adhesions, fibrosis, lesions etc from your disease. This needs urgent and thorough investigation.

Be strong, be kind to yourself - you are worthy of love, care and all the medical help available to help you manage your condition and get your awful symptoms under control.

Wishing you all the very best xxx