Have had Endo for a Long time. Had my fourth lap on 14th Aug where they unstuck lots of bits. Gave me two options..have IVF again or a hysterectomy. The pain came back almost straight away after my op...I refused both options as the only thing they didn't touch was my bowel so figured that was the only reason for my continued pain.
They will investigate my bowel further and I started prosrap today for six months but guess what? On Saturday 21st step (just over a week ago) I had what I can only describe as the worse pain I have ever felt.
It woke me up in the early hours of the morning it was pain that I find hard to describe, throbbing and yet shooting I was literally doubled over and could not move, nothing helped, not my painkillers or my trusty hot water bottle. Pain was so much worse than usual I really thought something else was wrong.
After hours it faded ( I'm not one to go to hospital unless I'm made to) for the rest of that day I was pain free......and have been ever since. I know its only been just over a week but I haven't been pain free for this long for years.
Rambled on now sorry, but I had a cyst in 2011 was told it was a small one, bout the size of an apple but no one has mentioned it since, not even after my last lap. Could this pain have been due to this cyst bursting? And if so is it possible it was causing the pain I felt before the lap rather than the endo or adhesions?
The only follow up I'm due for is a bowel scan that I insisted on but I really don't want to waste anyone's time if I don't need it, I know the only person who can give me answers is my consultant but I won't see him again for many months. Just wondered if this sounded like a burst cyst or anything else anyone has been through?
Any info would really be helpful! Xxx
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jinka
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Sure was a cyst burst. That is precisely what happens. A sudden paralytic pain out of the blue. All cysts that burst should be checked out and followed up.
The bad news is even after they burst they can quickly reform and fill up again. In a matter of weeks, so it is something to report to your GP .
He/she may try and book you for a scan to check on the situation, whether it was a full burst or pop and whether it has now disappeared or is showing signs of returning.
One of mine burst out of the blue.Agony was rushed to A&E by ambulance at 4am, and sent home with anti-biotics for PID (Arghhhhh I even told them it was a cyst but at the time i wasn't scanned or swabbed or anything), but within 2 months it was refilled and growing rapidly and giving me so much pain (more than the previous one did). It was surgically removed shortly afterwards.
I appreciate you feel relieved that the pain has gone, but you should still discuss it with the GP, even if he and you decide to leave the scanning to coincide with the bowel one.
Glad you are feeling better, but that doesn't mean you won't get that one growing again or a new one in the future.
This is my biggest fear at the moment....I've been pain free for a week and a bit but I'm terrified that it will come back everyday. I know I should be enjoying the feeling...and half of me is...the other half is just waiting for the pain to come back and preparing for it! Lol I know its not logical or rational and that I can't live life this way....but mentally I'm geared up for it to return at any time.
I'm sorry you have been through this too, but I'm glad that someone could answer my questions I really didn't even suspect the cyst until that awful pain happened and then all the pain stopped.
As far as you know does the pro strap help cyst pain? ( if it does occur again)
I did discuss this with my GP but because they know I'm being seen by consultants they will not do anything around my gyne issues except prescribe my pain meds.
I have learned an awful lot from joining this group, but I think the most important is that we have to push medical professionals who do not help us, until they do. I never thought I was good at insisting on things ( despite what the hubby has always said!) Until I got them to listen to me last time, I refused some treatment and insisted on what I wanted. I'm just worried now that I did not have all the relevant information before I made my choice! Because they didn't tell me, my fault also because I didn't ask about the cyst.
Your right though I will go back to gp and ask for a scan.
Impatient you are a true hero on here and you have helped me a great deal! Thank you so very much! Xx
Poor you it sounds really grim. I can only tell you what happened with me re: burst cysts (as I have had two a couple of months apart). Mine both happened before I was diagnosed with endo, in fact they led to the diagnosis rather than just 'oh they are just bad periods *shrug*, have a mirena coil' (grrr).
Mine both happened the day before my period started. I had a building up of pressure inside my abdomen and kind of up and inside my bottom area. I very quickly couldn't even sit and for the first one I only just made it to my bed and collapsed sideways. Still had jeans etc on and I could only just open the top buttons - that was all! It was the most intense pain I have ever experienced apart from full blown labour - was like one massive contraction that went on for about 90 mins. I think I went in and out of consciousness. Husband (who was at home thankfully) gave me my painkillers and yes the hot water bottle etc but I was alternating with raging temp and shivering. After about 2 hours I came out of the high level of pain and was just shocked. I couldn't stand up - felt like I had been kicked by a horse in the stomach. That lasted for about a week. Went to drs first thing the next morning and Dr was thinking it was an ectopic pg (but I thought it was more likely probably something to do with a cyst) and I was sent for a scan etc. The second one happened exactly the same way two months later and this time I was bundled up in a blanket by my husband and taken to A&E (like instructed 'if it happened again') where I was admitted to the gynae ward and had lots of blood tests and scans and all that. The surgeon I saw in the middle of the night was convinced I had endo and referred me to a colleague.
I am a lot better at the moment after my lap and excision surgery and zoladex but would not wish that kind of pain on anyone. My fear is that if it ever happened again I might not be at home, if I had been in the street or in school I would just have collapsed on the floor.
Best wishes, hope you stay pain free for as long as possible x
Thanks Pands, this really does help. The whole Endo thing is awful but when you throw cysts in and polyps (got one of them hiding somewhere as well) then things just get so complicated and hard to deal with.
I think I should have gone to hospital but I didn't, it was so early in the morning my hubby was in bed and I really am so stubborn that even if he wanted me to go, I wouldn't have.
Have it happening when i am at work in school or driving the car with the kids onboard is my worst nightmare if it happened again. For a long time i never left home without a phone to dial 999 for an ambulance etc.
But lately i have become a bit complacent and not been taking it with me everytime. I really ought to though.
Until that pain I felt, I would never have even thought about going to hospital. But you are both right, the thought of that happening while I was out or in work just leaves me feeling cold!
I'm often alone in work, or working with vulnerable people who wouldn't be able to summon help if it happened again! I do always carry my phone though.
I never even thought about what could happen if I was driving....that's scary! I drive a lot for work!
It is scary isn't it. On both occasions I would have been able to call for help on a phone in the first 15 mins or so, but after that I was drifting in and out of consciousness. I have very little memory of being taken to hospital and being admitted via A&E at all. Hadn't thought about driving...
I know this post is a week or so old now, but just wanted to encourage you to get checked out. I just had 2 cysts (one inside the other) burst while on holiday in Spain a couple of weeks ago. Also have endo. When they scanned me they discovered internal bleeding and when they operated they said there was half a litre of blood in my abdomen, which possibly may have been building up over a number of weeks/months before the agony of everything rupturing. They had to remove part of my ovary and stitch up the bleed. I got the impression it might have been quite serious if they hadn't operated when they did. When I arrived in a&e the agony finally passed and my blood tests came back normal. I am so glad they scanned me - I am not sure they would have in the uk. They were quite horrified and surprised when they saw the scan. I am sure this isn't they case for you, but you should have it checked out, if you haven't already. Xx
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