I am new to the site but have been reading everyone's posts for some time. My name is Rachel and I am 19 years old. I was officially diagnosed with Endometriosis in Nov 2015. I had symptoms(heavy periods,painful periods, painful pelvic 24/7) since i was 11 years old. I had been seeing doctors since i was 11 who assumed it was IBS and pied me off with birth control pills. It wasnt until May 2015 during my chemistry GCSE that i ended up in hospital with intense pelvic pain. I was in hospital for 5 days in total, i missed all of my GCSE's. On the 4th day they decided to do a laparoscopy to see what was going on, they assumed it was appendix. Once the op was over i was told that it was infact a burst ovarian cyst and that my pelvis was full of blood, there was no mention of endometriosis. The op was also done by a childrens general practitioner who didn't know anything about gynae problems.
Once i had recovered from the lap i got myself to the doctors to discuss what they had found and i asked if i could be seen by someone more specialist as i has read online that it could be endometriosis.It was a new GP that i had seen and it was a miracle as she specialised in gynae and agreed it could be endo. Anyway fast forward to October 2015 (age 17) I saw a specialist. She recommended that we did a urgent Lap again. This time a lot of endo was found in the pouch of Douglas and the ligaments and around the pelvic wall etc. Fast forward to today. I am exactly 3 weeks post op from my third Lap. This time they cut out the endo instead of laser burning it. I am in agony. 3 weeks post op and ive spent 2 of these weeks on 2 different antibiotics for a 'bladder infection' but it still hurts to wee?! i had the jaydess put in and i had a cystoscopy (i cant spell! ) during the lap, but 3 weeks? should i really still be in pain. I am embarrassed to go back to the GP again, i dont want to be palmed off AGAIN with antibiotics even though my urine sample showed everything was ok apart from trace of blood. I have taken co-codamol, codiene, paracetamol,ibruprofen and even tramadol (Not all at the same time!! ) but im still having pain in my right hand side. I dont have a follow up appointment for 6 months?
I guess i just want to rant and talk to you all about how im feeling. im feeling stupidly low right now!!
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This story sounds identical to mine apart from the fact I’m sat in the hospital right now waiting for my first lap. Had symptoms since I started my period back 6 years ago and I’m 19 too. Been told it’s a stomach infection, IBS and I’ve had to fight to get a lap. Been so disheartened and made to believe it’s nothing, when I’m in agony every day and absolutely drained with feeling like this! As strange as it sounds hoping the lap comes back with endometriosis to put my mind at ease and hopefully move forward. How come you’re on your 3rd lap and what was the time in between them all? Everyone seems to think we can’t have it bad because we’re so young but really, it’s possible and very real. Hope you’re feeling better soon and I’m always here for a chat xxx
Thank you for your reply and sorry for my late reply! I hope your lap went ok? did you get any answers? Do not give up!
So my first lap was a exploratory one done by a general surgeon who had no idea what endometriosis was or that it even exists. This was done when i was admitted in may 2015 at the age of 16. I was in hospital for 5 days and they told me they suspected appendicitis. When they went in they found a ruptured 'hemorrhagic cyst'n of which he described as 'old brown blood' (we now know this was a chocolate cyst) and my pelvis was flooded in hemorrhagic fluid (blood). I was then sent to see a to a gynae team who wanted me to have another lap in November 2015 when i was 17 (5-6 months after first lap). This consultant found,laser burnt and diagnosed Endometriosis. She tried to manage pain and symptoms for a year until she in the nicest of ways gave up. I have now seen 4 other consultants since November 2016. Last June (2017) I was referred to the endometriosis team in my area (not long been existent) I met another consultant but this time he knew what he was talking about! He wanted to preform another lap to know what he was dealing with and to see how much the endo was growing and how fast. So here we are just over 3 weeks post lap. He found severe widespread endo mainly on bowel (explains my ibs like symptoms). Im still awaiting for my letter to explain his findings as he did not have time the following day to come and see me in the ward (i cant blame him,he is busy!) all i ave to go on is 'i removed some severe widespread endometriosis mainly on your bowel, your bladder looks fine from the cystoscopy and i successfully inserted the Jaydess IUS for you.You have alot of healing to do internally Rachel' and thats all ive had for the last 3 weeks. even my GP hasn't had a letter yet so noone can help me when it comes down to these pains!!
So i saw my GP on tuesday and he sent me straight to the emergency Gynae team of my area and after a 6 hour wait i was sent home and told it was typical endometriosis pains? HOW CAN IT BE IF THE ENDO WAS REMOVED 3 WEEKS AGO?! i know it grows back but not that fast! I have the implant,Jaydess IUS and im taking degesterol and i still have bleeding my body hates me!
Also here if you ever need a chat! also if you are on instagram follow my private endometriosis page/account ; chronicallyrachx
The lap was successful, if we can use that word for a diagnosis for endo? Feels wrong! So she diagnosed endometriosis after I nearly didn’t attend the operation due to false hope from GPs, nurses, surgeons and family members “there’s nothing wrong with you” routine. Been in pain since I was 15 with heavy painful periods. Been told several times it’s things that it isn’t: irregular menstrual cycle, irregular hormone levels, stomach infection, IBS, food intolerances, STIS! All sorts. Been so disheartened through this whole process but feel like I had a mini break through this week. Although they said she didn’t find endo on the bowel and my bowel symptoms are the strongest of all so presume she’s missed something there. Got my second op in a few weeks so that’s a good sign, means they’re working to try and rectify all their wrong doing over the last few years. Have you ever thought about airing for medical negligence? My dad was the only one who would tell them there was something wrong with me all those years ago and then he passed away a few months later, and maybe I wouldn’t be in this state now having to have major surgery back to back if they did the right thing initially? Such a stressful period! Feel like we would be great to talk to each other and discuss our stories, they seem really similar! I’ve followed your insta so message me on there if you prefer ❤️❤️❤️xxxxxx
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