Hi everyone. I've been having severe periods that have been getting consistently worse over the past two years.
I feel as though my symptoms are really light compared to other stories I've read. My symptoms flare up a week before my period, light "normal" cramping, with painful, bloody, bowel movements, and then a day of crippling pain only on the first day of my period. My periods are not super heavy, sex is not painful(just leaves me with a "full" feeling). The rest of the month I feel fine, except for chronic fatigue and light pressure on my left side(ultrasound and colonoscopy were clear).
When I went to the doctor to ask about the possibility of checking for endometriosis via laparoscopy, she asked me if I had heard of endometriosis before I even brought it up, which seems promising.
Overall, it's not that I WANT Endometriosis, I just want answers to the pain/discomfort/fatigue I've had over the past 5 years. I am getting a lap done on March 9th, but I'm worried they wont find a thing and tell me it's all in my head, or that I'm just weak to pain. I mainly just wanted to vent to people who would understand what I'm going through, since family and friends think it's a little weird I wanted to push for the lap so badly. Has anyone else had these same fears? Or had "light" symptoms but still were diagnosed with endo?
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KatMT
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Hey, i had my lap in November just there and got diagnosed with stage 1 endo. I felt exactly the same as you, I was so worried they wouldnt find anything and it would all be in my head like my doctor had tried telling me. I didnt know much about endo before the surgery so thought that would "cure" it so part of me hoped for endo thinking it would all be okay in the end. Personally my symptoms have gone from bothersome pain with a few badish days to horrendous pain every day. I think its the coil that has made me worse but it does work for alot of girls. Have you talked to the surgeon about what the plan is if they do find endo? X
Thank you so much for the reply. The surgeon said if she found endo, she would do her best to burn off the lesions. I am very sensitive to BC pills and told her I would only consider them if I did have endo, and whether or not my boyfriend and I wanted to try for kids before I miss my fertility window. She seemed on board with my decision and said trying for kids would be the best option if I did have it. X
It's honestly so different for everyone. It's well-recognised now that you can have severe symptoms and mild endo, mild symptoms and severe endo or somewhere in between. It also affects women in so many ways and you can have all, some or none of the textbook symptoms.
Your symptoms do sound very typical of endometriosis so it's good that you are getting the lap. Don't feel silly for pushing for it as you know that is the only way to get a definite diagnosis either way. Personally I knew I wanted the lap to find out for certain before trying any medication etc.
I think pretty much everyone woman goes into a diagnostic lap worrying about if they will find anything and what will happen if they don't. Sometimes they don't find something and then years later tests do show endo after all. Sometimes they find something else that is causing the symptoms so that is useful too.
Best to try and see it as just the next important step that you have to go on on your health journey and to try not to overthink it - though I know it's hard.
Personally I had a diagnostic lap a month ago and had so convinced myself that they'd find nothing that I am still in shock that I do have endo after all!
Thank you for the reply. I'm trying not to think too much about it, but I'm a chronic over thinker and internet researcher, lol! Your comment makes me feel loads better. X
Hello! I had to reply your my lap twin I got mine the same day if thats any comfort. I think if you feel similarities with other women with the dosease there is always a chance 1 in 10 after all. Its better knowing than to never know and symtoms progress ect. Even if by chance they didnt you will have one thing off the list and you can look for other possibilities and be one more thing checked off the list.
Some people do have lighter symptoms than others so I wouldn't dismiss it completely. Keep researching and make sure you question the doctors what the plan is if osmething is found or isn't found. I think many have this worry including myself. Im afraid I may have conviced myself but I get leg/hip pain along with horrendous peripds and chronic consitpation. Call me mad I'm looking forward to my op in a way im 19 and feel 91 at this point.
Positivd thoughts, good luck and make sure you have peppermint tea for the has pain i heard its a good tip xx
Lap twin! I love it. You'll have to update me afterwards to let me know how it went! Thanks for the tip on the peppermint tea, luckily it's one of my favorites. Good luck to you! I hope everything turns out well for you! X
Forgot to say this in the last post but the best piece of advice I could give anyone undergoing a diagnostic lab is research as much as you can on endo. I didnt read up much before my surgery so all I knew was its common and I had the symptoms. I felt lost talking to the surgeon after not fully understanding what she said. Ive bought a couple of books that have been really helpful now but I wish I had that knowledge previously. For example I get shoulder and hip pain every time I have a period but didn't connect it to endo at all as I believed endo was only the pelvic area. I did not tell the surgeon about the shoulder/ hip pain but after hearing a few other girls have got to I wish I had said something incase there is endo there that they didnt find.
Also might not apply to you but after surgery if you feel sick or pain make sure you tell the nurse so they can give you meds to help. Make sure you take pads and very comfortable trousers with you. I took juice and snacks in with me as my diet is quite limited and I knew I would be hungry when I woke up. You should get a post op letter to hand into your gp, I would photocopy it so that you have your own record incase of future appointments with different specialist or private care. Best of luck with the surgery! X
Thank you for the advice! Im going to ask at my pre-op if it's possible she can record the lap so I can view it after. I've gotten photos from my colonoscopy and found it really interesting.
Last time I underwent general anesthesia, I was sick as a dog. I'm going ask before the surgery if they can give me nausea meds before I wake up.
I've been reading about endo non-stop for the past month or so now and will probably keep researching daily until the surgery. Thank you for taking the time to message me. It means a lot. X
I have pretty much the exact same symptoms as you. My lap is booked for 13th March, and I’m also nervous they won’t find anything. It’s such a strange feeling, kind of hoping for endo but also not lol.
I’ve researched endo soooo much, and I honestly can’t think what else our symptoms could be. I’m holding onto that. Hoping for the best for you - let us know how it goes. Xx
It's a tough feeling for sure! Let me know how your surgery goes as well. Its comforting having other women in the same situation. Best of luck to you too! Hope everything goes well. Xx
I think it's perfectly natural to worry they won't find anything. I've had two laps. The first the surgeon said he couldn't find anything and there was nothing wrong with me. I made the mistake of not following this up or pushing for a second opinion for over two years. I had my second lap on Friday and endometriosis was found.
Whatever the outcome of the op question the doctors and if endo isn't found discuss other causes and don't give up! Remember the pain is real and not in your head even if endo isn't the cause something is. If the doctors try to dismiss your pain if nothing is found, find new doctors
Getting diagnosed is such a long hard process (as you know). I really hope you find comfort and relief. Xx
Wow. I couldn't imagine having a Lap that's negative and having a second one that's positive. That must have been really hard. Thank you so much for the reassurances and boost of confidence. Xx
Hi Kat. I'm also having the same feelings and thoughts. I have my lap on the 6th March
My symptoms have started over the past two years since coming off contraception and trying for a family. I also have and do still research daily like yourself and I'm trying to prepare myself mentally for both positive and negative outcome which is difficult. I'm trying to understand it all and gather questions and information before my pre op. It's nice to read others are in the same situation. I hope it all goes ok for you too. X
Hey, I know how you feel. I’m still waiting for a lap but scared it comes back negative. Otherwise everyone will think I’m lying.
I have medium flow during my period but severe cramps and painful sex. I have a few symptoms that match endo but my periods are regular now and not extremely heavy I go through loads of pads a day. However I have blood in my wee (idk if this is normal or not tbf). An endo specialist suspects I have endo due to the symptoms I told him and the tenderness he felt during the Pelvic exam was around my ovaries mainly (ultrasound last year came back normal)
Hope everything goes well though and you get answers 💕
I was in a very similar position to you. I spoke to my consultant before the lap and explained that I was more scared that he would find nothing and that the pain would continue, than if he found Endo. I felt silly wishing endo on myself but I wanted an answer as to why I was in so much pain (only one day a month though) and my biggest fear was that they would tell me it was normal period pain and it would just continue. He was brillIant and explained that if that was the case, then he could cut one of my nerves which would eradicate the pain I was getting. If you haven’t already, share your worries with the surgeon and see what they can do while they’re in there.
In my case, they found endo, adhesions and scar tissue which they removed and have been pain free for 6 months now. Definitely worth it!
Thank you for the suggestion. I had no idea they could just snip nerves like that! I'm so glad you've been pain free for a while now; That gives me a lot of hope. X
Apparently it wouldn’t have caused any damage or affected anything internally... definitely worth having a chat with your surgeon about options just in case they don’t find anything.
I really had to push to get this far though and to also get my lap. Ultimately, it’s your body and you that is in pain. I felt such a relief when I knew that my lap was booked in, just to know that I might finally get some answers. Keep strong and good luck xxx
Hi! your story is very similar to mine! same symptoms etc... i pushed for lap as didnt want things to get worse .. i had my lap 2 weeks ago and was terrified they wouldnt find anything.. however they did find endo and adhesions too and it was treated and mirena coil inserted. I have a good feeling about the future and i hope your story has a similar ending as finding nothing must be horrendous and leave poor girls in a worse place than if endo is found. Good luck! Anything you want to know about lap just ask x
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That must have been really hard. Thank you so much for the reassurances and boost of confidence. Xx
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