Hi ladies, I just wanted to as a question and post a few symptoms I get to see if anybody else also experiences what I do- there are a lot of different symptoms with endomitriosis and I have always felt alone with my symptoms.
I'm 26 years old, awaiting a laprascopy (hopefully this month after a year of waiting). I've had symptoms for approx 3/4 years but have never been taken seriously and have just been told to 'expect pain' or it's my IBS nothing more.
I have extremely painful heavy periods, sometimes with blood clots, painful mid month pains which last for 3 days and bloating but the symptom I always wonder about is a lump feeling- to me it feels like a lump or stretching on my right lower abdomen. I always get pain on physical exams there and it feels firm. When I lie down flat my right side in particular just feels strange like something inside is being stretched and like there's a lump behind it. I haven't felt a lump I just have the sort or sensation of one being there- and that's all the time. It gets worse during my cycle and the pain can be worse with my diet sometimes. It's quite painful most days and I'm beside myself worrying in case it's something else.
If anybody else can help me understand what is happening or has experienced the same I would love to hear your experience with this and how you manage it
Xx
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Have you had an ultrasound scan? I had exactly the same sensation and symptoms and they found a 22cm fibroid growing in my womb in
July last year. They tried to remove it in October but found that I had another really rare condition plus stage 4 endo on my womb. I’m currently having Zoladex for 6 months to shrink the fibroid and help with the endo before they operate in April.
Not saying that you have got this too but would recommend pushing for an ultrasound if you haven’t already had one.
Hi Very sorry for my slow reply i have been off the grid for a while. Yeah i have had a few U/S- some normal some transvaginal and they never saw much (only microcalcifications on the cervix which they said was nothing??? maybe small cysts they werent sure). were you ever given a CT scan or a stronger scan? thank you for your help its comforting knowing that i'm not alone with this!
Hello!! I have practically the exact same sensation you described. I've been sent for ultrasounds and also seen a specialist as they thought I could have a hernia! Everything came back clear and so I'm at a complete loss but it is definitely worse during ovulation and after my period. I have heard many people complain of the same thing. I have a lap at the end of Feb so hoping that may find something to explain it x
Hi sorry for my slow reply i have been off the grid for a bit! so have they never been able to find anything ? that's like me the only think they could see were microcalcifications on the cervix- i hope everything goes ok for your lap and you get some answersxx
Hi love. I definitely can relate to your symptoms in your right hand lower quadrant. I've had really really bad pulling pain and aches for 18 months now. 3 negative ultrasounds and negative CT scan of Colon. The pain has stopped me running and doing some exercises at the gym. An MRI showed a had a prolapse of the small bowel and I'm assuming that it's going into my vagina. However the urgogynae specialists had an MDT and agreed it wasn't significant to repair despite my pain. Annoying I know. They refused to do laproscopy because MRI showed no evidence. Yes another annoyance and not within NICE guidelines. I'm seeing them again July 2022.
Proactively I have had a coil fitted similar to mirena so if it is endometriosis cells in that area then hopefully after 6 months the pain may go away.
I've started on Imiprimine which has helped my pain enormously. I couldn't tolerate Amitriptyline as it gave me hangovers every morning.
I know it is working because I ran out of Imipramine meds over Xmas and NY and pain came back 100%.
Had gastro appointment yesterday who said that my right sided pain appears to be related to food sensitivity and to do an elimination diet with lactose, alcohol, caffeine, gluten and chocolate.
I've given a lot of info here because it may help at least one person.
I hope you get some answers.
I paid for a private ultrasound £25 so may be worth considering this. Also a private MRI is around £250 to £300.
Unfortunately the wait times in the NHS are extremely disappointing for us girls. This is why this forum is a good supportive network.
Hi so sorry for my late reply i have been off the grid for a while, i completely get all of those pains you mentioned above sometimes i have to walk around hunched over! aw no that sounds horrible! have they given you a plan to fix it or is it something that repairs over time?
ah yeah with food intolerence that makes sense because i have ibs and when im on my period it flares up too. and yeah i had my pre-op december and after 12 months and i will need another one because the waiting list is that long it will expire! thank you for this its nice to know im not so alone with all this and i hope you get sorted yourself! us girls really do have it so rough!! big hugs back xx
Hi - I could have written your symptoms about myself. I'm so sorry, it's totally sh*t isn't it? I also went down the hernia dead end and then was repeatedly just fobbed off about the lump and distention - I have had doctors even say to me it's just because I'm slim so can feel it?! (WTF right!) For me, my right ovary is stuck (again, it was "freed" during a lap 2 years ago). I've been on Zoladex since April last year and this has helped a great deal... but I still experience pain and tugging on that side. I also have a lot of GI issues (was repeatedly told it was IBS and left to it). This past year I did some private tests for SIBO and also full stool test. I had several issues, with high SIBO and malabsorption. I've done a bunch of gut healing protocols and treatment in the last 6 months which has improved things a lot. However, I suspect my adhesions are causing my ovary to be stuck and it's also causing an issue or distortion to my intestines / bowels too. I'm considering trying Clear Passage, but it's expensive and I live a long way from London. I'm probably going to try and see a gastroenterologist to see if coming at the issue from that perspective rather than gynae leads to anything better for me. I'm due to finish my 12 months of Zoladex in March and am pretty worried about what will come after..
I can totally empathise with how lonely this can make you feel. You can message me if you'd like any more info on some of the things I've been looking into. Take care x
Hi Sorry for my slow reply i have been off the grid recently, it really is!! wow thats not right its so bad how they fob people off like that!! ah yeah i have just had to google SIBO did you get that done private or on NHS? i hope you managed to see you gastro consultant to see what they say! and aw no will they stop your ZOLDEX? I really hope they have a plan in place for you after finishing it, because living in pain is horrid- thank you sweat i'll send you a quick messege now about the things youve been looking into thank would be so helpful!xx
Hi sorry for my slow reply i have been off the grid recently- ah right have they managed to get rid of it? i had a U/S that said i didnt have any cycts so they pretty much said no cycts no problem its probably endometriosis go home and wait
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