I've hit rock bottom and starting to thin... - Endometriosis UK

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I've hit rock bottom and starting to think this is in my head :(

Mindfullness4791 profile image
8 Replies

Sorry, I feel like I have messaged on here so much. Recap is I'm 48 and have been having significant abdominal pain, particularly the left hand side. I have had this pain for years but up until a year ago it was only for a few days. My periods have always been heavy. I've had various scans over the years, that have been normal.

I've been in so much pain the past month that I am off work and the expedited my gynae appt. She also gave me Morphine, which hasn't worked.

My gynae appt was cancelled 2 days before, due to the junior doctor strikes, so I booked a private appt and was seen this week.

I feel so down since the appointment. I fell apart in there and was a complete mess. I cried and didn't really get out what I wanted to say.

I explained that I had incontinence, thin stools and bleeding from the back passage, which he said wasn't linked. He also said the pains in my arms/legs were probably due to anxiety. Baring in mind the previous gynae said I couldn't have Endometriosis due to ageand treated me for Fibroids with Prostap. He said it wasn't Fibroids causing this.

I've received the letter from the consultation and he is putting me forward for a laparoscopy. He concluded saying that he might not find anything, or could be severe Endometriosis.

I just feel stuck and completely trapped. How can this pain be in my head :(

Thank you if you got this far xx

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Mindfullness4791
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8 Replies
Shay30 profile image
Shay30

sending you big hugs do not let this go make sure u get a lap booked in asap and I would request a poo sample due to the bleeding and ask for your bloods to be done I was NOT listened to for many of years but what your going threw is awful and you need answers ❤️

Mindfullness4791 profile image
Mindfullness4791 in reply toShay30

Aww, thank you for your lovely reply and the hug 🤗 I've had 2 fit tests thankfully and bloods are normal. I just want to know what it is. The not knowing causes the anxiety.I'm so sorry to hear that you were dismissed for so long. It is just so wrong :( xx

Daisiesanddolls profile image
Daisiesanddolls

Hey girly also sending big hugs ❤️ so sorry to hear and I totally get it. Had this for over 10 years now and it can be soul destroying. For me the mental stuff is worse than the physical. It's had such an affect on me so I totally get it and never think or be told 'it's all in your head' keep going till you get answers.

Mindfullness4791 profile image
Mindfullness4791 in reply toDaisiesanddolls

Thanks so much for the hugs. I really appreciate them. I just don't understand why it is so hard to get to the bottom of it all :( xx

Avourneen profile image
Avourneen

I'm very sorry to hear you have been treated like this. Thin stools can be a sign that you have endo through the bowel I had that and my endo was very deep and right through the bowel.

You need though to change your doctor urgently. No good surgeon will ever consider doing a lap without a proper scan first. For example if they do a lap without scanning you how do they know whether it is thrugh the bowel and they need a bowel surgeon ?

Thre are a lot of gynaaes around who know next to nothing about endo, that is shocking but it's true nad if you are having surgery it is vital to get one who knows what they are doing or things could end up much worse.

Your last gynae is a case in point saying you are too old to have endo (completley and utterly wrong and untrue) mind you this person saying the pains in your arms and legs could be caused by anxiety is also ridiculous. I know endo can cause pain down your legs if it is on your sciatic nerves but arms seems unlinkely but it must be cause by something and needs looking into.

I think what you are experiencing i medical gaslighting, its very common. Some doctors just think women are overly emotional than that our pain is not real and try to convince us of that. But don't stand for being treated like this, book yourself in for a proper scan with a really good sonographer they can then tell you exactly where the endo is, how bad it is, and refer you to a proper endo specialist gynae.

I'll send you some details of how to go about this. Have confidence in yourself, you aare the person experiencing the pain so you know exacyly how it feels and much more than the doctor from that perspective, don't allow them to belittle your experience and knowledge as a patient and don't allow them to gaslight you. You know what is going on and you will need to fight for proper treatment. Good luck. xxx

Mindfullness4791 profile image
Mindfullness4791 in reply toAvourneen

This is so true. You have summed up exactly how I feel. I feel like I am being gaslighted 😢 I'm so tired of it all.Thank you for taking the time to reply xxx

Jupiter2 profile image
Jupiter2

I'm so sorry to hear this, and really sympathise. I have repeatedly been back to the gp for 12 years since my hysterectomy with abdominal pain, bowel pain etc and told that I cannot have endometriosis again. Finally, last December I was diagnosed with deep lesion endo from a private MRI scan. Now I'm back in the NHS system waiting for a gynae appointment but I feel so angry that doctors don't listen and feel that most of my adult life has been blighted waiting for endo diagnosis ( it took 20 years the first time then 12 years the second)

Mindfullness4791 profile image
Mindfullness4791 in reply toJupiter2

Thank you so much. I feel so sad reading your post. I just don't understand how they can dismiss the level of pain and how detrimental it is to our lives.I hope you do not have to wait too long for an appointment with gynae 🙏

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