Endometriosis diagnosis requiring special... - Endometriosis UK

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Endometriosis diagnosis requiring specialist

Bordercollie2019 profile image
9 Replies

Hi all, I’m in desperate need of some advice/ comfort... anything really.

I am 29 and have been telling the GP for years something is wrong. The pain I experienced before I started the pill was unbelievable, I used to collapse. I was a teacher and have previously been taken out of exams in agony, once I had to lie on the floor in the PE cupboard and the teaching assistant had to call my dad to come and get me. After years of fighting I finally had an appointment with a gynaecologist who confirmed I had IBS and said my symptoms were down to depression. I had previously been diagnosed with chronic fatigue but this had never been taken seriously. She did send me for an ultrasound which showed possible adenymyosis and I took my sister to the next appointment as no one was listening to me.

Anyway last Thursday I finally had a laparoscopy. I was told in recovery that my right side was in a bad way. The ovary and bowel has stuck completely to my womb. They tried to move the ovary for a better look and it caused the womb to bleed. They could not find a Fallopian tube and said they did not know if I was born without one or if it’s twisted. They have referred me to a specialist but the consultant said any operation would be very risky due to how “stuck” my bowel and ovary are. My left side looks irritated but she wasn’t worried about that yet. I had to stay in hospital two nights as the exploratory surgery lasted much longer than expected and I was in immense pain.

I’m just so panicked and sad and worried. I’m still in a lot of pain and I have no idea what comes next. Does anyone have a similar experience? Any advice would be so appreciated x

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Bordercollie2019
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Bordercollie2019 profile image
Bordercollie2019

Thank you. The consultant has referred me on. She also mentioned that the tube leading from my kidney to the urethra was also “in danger” and I need to discuss further options with the specialist. I just want to get it sorted and know that I can start a family.

Vincentcat profile image
Vincentcat

I'm so sorry you've had this experience. It's such a debilitating disease.

I would do your very best not to worry, I know it's hard.

If you are getting a referral to a specialist I think that's the best thing. It's possible that a normal gynae surgeon has been overwhelmed by your specific situation and this has come across when he's talked to you after the procedure.

Like the others said a specialist is specifically trained for this kind of complex procedure.

Try and have a hand in any decisions or referrals that are made for you and do your research because then they can't fob you off.

I would recommend going to a BSGE centre that isn't just a women's hospital but a general hospital as well because then they can have a colorectal surgeon and urologist present at future procedures.

Obviously further investigation surgically does come with it's own risks but you can't live like this and I'm sure there is some kind of intervention that could work for you.

Best of luck, keep us all posted xxx

Bordercollie2019 profile image
Bordercollie2019 in reply to Vincentcat

Thank you so much for taking the time to reply. I just feel a bit overwhelmed and lost at the moment and it’s good to know others understand what I’m going through. My husband is very clueless and we’ve tried to explain it to him but he’s just not “getting it”. I’m five days post op and still in an awful amount of pain. Thought I was feeling better yesterday but it’s really bad today.

Vincentcat profile image
Vincentcat in reply to Bordercollie2019

Oh gosh it is awful being in such pain. Have you got some good pain killers? After my lap last year I was in extreme pain about 5 or 6 days after, truly agonising, ended up going to A&E, they got me on a morphine drip and IV antisickness. They did a scan and found I had a massive heamatoma as a result of my op, it was attached to my bowel and sitting in my pouch of Douglas. With you saying your womb bled during your op, did they say they manage to stop the bleed successfully? It might be that you too have developed a heamatoma?...

I'd would recommend A&E if the pain is the same or worse tomorrow, preferably at the hospital you had the procedure done so your consultant may be able to see you and they'll know your specific circumstances xx

Vincentcat profile image
Vincentcat in reply to Bordercollie2019

By no means trying to worry you further, just with you being in more pain as opposed to easing pain as the days go on, sounds very similar to what I went through

Bordercollie2019 profile image
Bordercollie2019 in reply to Vincentcat

I wonder if the pain is related to my bowel movements. They have been agonising today after several days of constipation. I just feel so down and I don’t cope with pain very well anyway. Thank you for taking the time to reply to me. I’m sorry you had such an awful experience. Did you bleed after your lap as I haven’t really?

Vincentcat profile image
Vincentcat in reply to Bordercollie2019

It's no problem, like you say it's comforting knowing you're not alone and other people can truly empathise with what you're going through.

Have you got some gentle laxatives to help with your bowels post op? I'm guessing they gave you morphine in hospital which like you said causes constipation. I use docusate and laxido sachets. The docusate is a gentle stool softener so as opposed to lactulose it doesn't tend to give me the opposite problem it just makes things easier. I use laxido if it's been a few days and I know I must need to go, it just gives it that kick start if you understand what I mean.

Have you been able to potter about at all? Obviously nothing strenuous, and I mean literally up and down your hall a few times, may help your bowels get moving and also alleviate wind as that may be adding to your pain.

These days I get pain in the same place when I need the loo or even if I have wind, I think it's due to adhesions left over from my heamatoma.

I did bleed quite a lot post lap but I did happen to fall in line with my period so couldn't be sure if it was just that. I did start to bleed the day of my lap though so I'm sure some was due to the op.

What pain killers have you been taking? Xx

Vincentcat profile image
Vincentcat in reply to Vincentcat

Do you have any friends or family near by who could look after you and keep you company? Even just make you a cup of tea in bed and watch a fun film, help lift your spirits a bit? Xx

Bordercollie2019 profile image
Bordercollie2019 in reply to Vincentcat

I had morphine every two hours for two and a half days and now taking diclofenac, codeine, paracetamol and anti sickness tablets. I’m moving about ok I just feel like I have really sharp period pain. I was advised to take two laxido sachets a day but it took days and eventually used laxatives too but it still took another day before I could go and going was one of the most painful experiences I’ve ever had. My husband works 7 til 5pm every day but my sister has popped over each day for an hour. I feel like I’ve wasted my days just lying on the sofa sleeping. Can’t concentrate on tv or reading at all xx

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