Hello, this is my first time posting so please bear with me!
I have been struggling with symptoms of endometriosis since I could remember. I started my period at around 9 and I would say from 13+ my periods had been extremely painful, heavy, putting pressure on my bowels, mood swings etc (the list really does go on). GP prescribed tranexamic acid at this age.
From the age of 16 to 27 I had frequently been told by different medical staff it’s likely to be endo, IBS, PCOS etc. No official diagnosis. Was sent for multiple scans - nothing ever found. Was put on the pill, and hoped that this would improve (which it did for the first few months then all symptoms returned alongside more depressive mood swings). It was only in my early 20’s I was referred for the first time to the gyno clinic. I have been referrred around four/five times throughout my early to mid 20’s to different Gyno’s where I felt I was not really listened too, laughed at when I said I wanted children eventually so did not want to keep being on the pill, injection etc. The outcome of these appointments were medication was prescribed to help ease my periods.
Fast forward to the last year - I experienced 7 weeks of constant heavy period and passing pretty big clots, constant lower abdominal pain that penetrates through to lower back. This was really starting to affect my quality of life / little to no sex drive because of the pain, felt/feel depressed. I was finally referred back to a new Gyno who listened and immediately (after reading through my notes) made a referral for a laparoscopy to be done and the coil inserted. I think half the reason this was not done before was because of Covid.
Fast forward to yesterday my Laparoscopy was booked in yesterday at 07:30am. Got put onto a ward, waited a while and then went into theatre around 11am. When I finally came round (around half 12) I was extremely sore but happy this has been done and was keen to know what was found. However, when the surgeon came to see me afterwards he did not seem very happy - walked in and started shaking his head and stated the laparoscopy was unsuccessful (he stated this had only been the second one in 5 years that had been unsuccessful). He states that due to my stomach muscles being too tight and contracted he could not get through to where he needed to see without causing further harm or damage. He asked me how many kids I’ve had as he had seen scarring? - I made him aware I’ve had no kids…
He didn’t really explain much more other than he wants to see me in 16 weeks to re-look at my options. Has anyone else experienced something similar? I’m worried that due to this happening they will not try an laparoscopy again therefore I will not get to the bottom of what is going on to my body? I am now 31 and would like to know if it’s possible to have children (even though I have never fallen pregnant) or what can be done about this constant pain and suffering felt on a daily basis.
Right now I feel not only that my belly button is going to pop 😂 but sort of deflated and upset that I got no real definitive answers!
Any advice or words of wisdom would be greatly appreciated!
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BitterSweet09
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My story is remarkably similar to yours. Word for word.
The repeated referrals, the scans showing nothing. Everything. Never falling pregnant, having no children but wanting the option. I’m 33 and have just had stage 4 endo/andenomyosis confirmed by MRI. My uterus is completely tethered to my bowel now amongst other things. I’m now waiting for the specialist endo centre MDT meeting to review and specify how they will approach surgery.
Was an MRI carried out before your laparoscopy? Due to the length/severity of my symptoms my latest consultant requested an MRI beforehand to get an idea of what would be located should I proceed with the investigative Laparoscopy. They were concerned they would put me to sleep and not be equipped to deal with what’s lurking. She was the one of five consultants I’ve had that really listened to my symptoms.
Was the surgery carried out at a general hospital by a general Gyne surgeon or a Endo specialist? I would suggest being referred to a BSGE centre if you’re not already with one, they are the people equipped to deal with complex cases.
You can find your closest using the following site: bsge.org.uk
I’m sorry you’re going through this, it’s absolutely rough. Even worse when you’ve been telling doctors for years and they’ve fobbed you off over and over, leaving the disease to crack on ruining your insides. Especially dealing with the uncertainty around pregnancy. They don’t understand those worries either, one consultant actually said, ‘don’t worry about that for now’ like it’s that easy.
Hi, just to add: to access a tertiary care/BSGE accredited endo centre, you have to already have a diagnosis of severe and/or recurring endo.
The key is to get diagnosed first (a lot easier said than done), which can be done by ultrasound or MRI as long as the people scanning/interpreting are experienced with finding endometriosis…
You are allowed to ask whether a consultant has a special interest in endo or extra training in endo. You can also request a second opinion for your ongoing unresolved issues.
If you can afford it or have insurance cover, you can access private scanning specialists and gynaes (but also check their endo credentials and get reviews if possible!)
I'm so sorry to hear your story. It sounds like you've got adhesions, which can occur as a result of endo, and this can make a laparoscopy tricky. I've had 2 gynos saying they won't do one because of the risk of sustaining a bowel injury (I had peritonitis and emergency surgery in 2014). Another gyno said he could work around that and then he backtracked and changed his mind. The third said he could do the lap, and excuse the adhesions whilst he's doing it. I saw him on a private basis, I don't have health insurance and it was really expensive. So, I'm really confused. I've got the Mirena which has eased things a bit, but I still get terrible abdo pain from time to time, which concerns me.
can they do a bigger surgery to have a look? I’ve had a blood test to check my ovarian reserve so maybe they could request that blood test? The reason they’ve requested the blood test for me is because I only have 1 ovary left as I had such a big cyst it damaged my ovary so it had to be removed. I keep getting cysts all the time. My first surgery was ‘clear’ of endo but I’ve begged for another surgery as I still have symptoms & now my new consultant has said that many women have surgery which shows no endo but the new guidelines apprently say that many women have surgery which show no endo but still have symptoms so now they sometimes base the diagnosis on symptoms but im not sure if I will ever be formally diagnosed based on symptoms. Sorry if I’ve confused you at all but what im trying to say is if u do have surgery again and they cannot see endo it doesn’t mean u don’t have it as it cannot always be seen. Always here if you want to chat.
As already asked, have you had an MRI? I had a laparoscopy and was told I didn't have endo, it didn't help that the gynae who carried it out wasn't an endo specialist. After going to a third consultant who was specialised she asked if I'd had an MRI, although she thought I just had referred pain due to back problems, I knew it wasn't! Lo and behold, the MRI showed I had DIE Endo and possible Adeno, (confirmed once I had my hysterectomy). So, if you haven't had one, please ask for it, I bet they will see it. It shouldn't be a fight for these things, but unfortunately it seems it always is. Hope you get the answers you need x
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