After years of suffering from heavy periods so bad that it feels like a magnet is pulling me to the floor, pain during intercourse, bloated belly, abnormal smears, pelvic pain, shooting pain in my thighs, constant tiredness I was finally referred to a gynecologist as my GP suspected all of these symptoms could be endometriosis. Before I seen the gynecologist I had an ultrasound which showed a tilted uterus and no sign of my ovaries. Upon seeing the gynecologist for the first time he recommended a laparoscopy but he did manage my expectations to say that he only finds endometriosis in only 8% of people my age (24) that he performs laps on.
I didn't give the lap much thought and as the appointment was only a few weeks away I got on with work etc then before I knew it I was going in. On the day everything seemed very organised and before the surgery the gynecologist explained the procedure but again told me not to get my hopes up that he would find anything.
When I woke up from the surgery I was in agony and couldn't move at all and took whatever pain medication they would give me. At some point during the recovery stage the gynecologist came to see me and because I was so out of it I can't remember exactly what he said except that he didn't find any endometriosis and that there was something wrong with my bowel which may be IBS... Naturally at the time I had no idea what was going on but now after staying in hospital for a full 36 hours with no more information I am more confused then before I started!
I have never had any 'bowel' symptoms relating to endometriosis and similarly I have none of the symptoms of IBS listed on the NHS website but I do have a whole load of endometriosis symptoms plus a family history (4 aunts, 1 cousin on my mother's side) and so I am now exceptionally confused and upset by the whole thing as speaking to my GP and when I went for the ultrasound all signs point to endometriosis yet here I am after a lap apparently with nothing wrong except IBS?!
To be honest I'm really upset as it feels like I have been faking it and even having to tell work etc that they didn't find anything makes them doubt that I'm genuinely ill. Has anyone else experienced anything like this or have any advice of where to go next?
Thanks in advance
A
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aliesha1228
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I'm sorry you are having a such a rubbish time - I empathise as it took me years to get diagnosed with endo. Did you see an endo specialist or was it just a normal gynae? It does seem that it can be missed very easily. I ended up researching endo specialists myself, and then requesting my GP to refer me to the one I chose. I did pay to have a private consultation with him first, and he then wrote to my GP saying that he thought I had symptoms of possible endo. I think I was pretty lucky as the GP then referred me without too much of a fight, I think sometimes it can be a bit of a battle.
Don't feel like you are making things up, you know your body better than anyone else, and what ever is casing you pain is real. I got fobbed off so many times, it makes you feel like you are some crazy hypochondriac!
Good luck, and hope you are feeling better from your op.
after multiple miscarriages, I have finally been referred to have a lap to investigate endometriosis and was wondering if you could recommend who you saw?
Many thanks!!
Hi - this happened to me too. So I totally understand how you feel. All the symptoms, seemingly text book case with heavy clotted periods, flooding, all the right pain etc, etc, plus family history - the works. I was horrified and really didn't want to tell people that I didn't have endo! I did though. I'm still in pain and have something wrong after all.
It's really annoying that they come and talk to patients so soon after waking. I was so out of it that they gave up and later I had to keep asking for someone to tell me the results who then came to see me during the night. I was kept in due to tachycardia, infection and fever and felt extremely ill (thank the world for morphine!). Anyway, they had taken photos during the operation and showed these to me and there clearly was absolutely no endo even though, as I said, I had every symptom and my gynae was as convinced as I was. In fact everything gynae related looked perfect.
However, my bowels were very distended in places so it was pretty clear that this was the area to try and sort out. I'm still in as much pain as before (well worse at times due to Mirena I assume but that's only been in a month so I'm hoping that will improve). They inserted Mirena as planned because the pain is definitely worse during a period and they think that it will still help me as hormones may make the bowel cramps more painful. Not sure about that so we will see. I am in a lot of pain but am 'happy' to accept that it is bowel related. Bowel cramp and period cramps are very similar types of pain. I know that from several specific experiences. I now am having to see a gastroenterologist to investigate further. I do have the IBS symptoms of gas and bloating. I've given up different foods that cause those kinds of problems to no avail. Oh well. Just yet more investigative work to be undertaken. Please do take heart. Your symptoms ARE REAL. Very real. They may just stem for a different, but similarly located part of your body. Talk to your GP to get further investigations started. You may need a second opinion about the endo or you may find that it is your bowels. Either way don't let anyone think your pain is in anyway lesser. You still need medical help. All the very best. Dx
I too have the Mirena. This is my second one and found this one to be much harder than the 1st. I have not yet been diagnosed with endometriosis but suffer from all the symptoms. I had one laparoscopy 7 years ago and found nothing, they too spoke to me and i have no idea what they said afterwards. Im due for another this yr and hope they can help me. I cant be intimate with my partner as the pain is immense and deep. The worst part is he is only home for 2 weeks as he is fifo and is always home when im menstrating and usually end up in tears due to the pain inside and in my lower back. Hr thinks i dont want to have sex with him but when i tell him its the thought of the pain and how it feels, he just says "you never used to be this bad" i am damned if i do and damned if i dont
Sometimes i feel like its all in my head. My gynae makes me feel that way but my gp is the one who said to keep fighting as my symptoms are not normal. My belly bloats worse some cycles than others, my cramps are literally gut wrenching, pain when having sex and the lower back pain feels like a burning stabbing sensation to the point im in tears.
I also feel its getting worse and not better but am thankful for the mirena. I just dread the day i have to take it out when i want to plan to have babies as i dont even want to imagine the pain im in when its out.
All in all, i am glad im not the only one who feels like theyre crazy! I know something is not right. I just wish they can find what it is.
Just because they didn't find endo ladies - doesn't rule out adenomyosis [aka Adeno] (the hidden endo) for want of a better term.
Have a read through the adenomyosis website and see if that matches your symptoms too...and then get cracking pushing for that to be checked out as well.
Much easier to treat too. It needs an MRI scan for the clues to be spotted.
there is a bright side..at least you are not riddled with endo invading all your organs down below (like some of us have now got) and it does narrow down the search for the answer.
Even if you do have IBS- something is irritating the bowel , which following the endo diet is a good way to start to see if that relieves the pain and symptoms you are experiencing.
Cutting out certain food groups can reduce pain levels and certainly worth trying to do for yourself endo or no endo to see if that helps.
It just feels like such a kick in the teeth when you get to this stage and they find nothing because you know what a fight it is to get here! The gynae isn't an endo specialist but there don't seem to be any in my area. In the mean time I am (kind of) following the endo diet and cutting out lactose etc does help a bit but I'm still convinced there is nothing wrong with my bowels in general. I shall have a look into adenomyosis as my cousin had both this and endometriosis but I didn't even think to look into it until now.
I have an appointment with my GP on Tuesday to have the stitches removed so I'm hoping the lap report is in so she can talk me through it. I will keep you all updated on any further information as the saga continues!
Hi hun sorry to trouble you but did you manage to get to the bottom of your troubles? ! I really hope your a lot better now x
Hi there - I know just how you feel as I've had quite a few laparoscopies where "nothing" has been found, only to have another one 6 months down the line where endometriosis suddenly shows up. Endometriosis can be microscopic & sometimes cannot be seen by the naked eye. It's a bastard when all of your symptoms point in that direction and then you end up without any answers. Another possibility is Adenomyosis - as mentioned above. They used to be only able to diagnose adenomyosis post-hysterectomy but now I understand that it can be diagnosed without having to go through such drastic measures. Research is also being done at the moment where a "marker" for endometriosis will show up in blood tests. Hopefully soon anyone with endo symptoms will be able to have a blood test to see whether or not it is endometriosis causing the problems.
I was diagnosed nearly 20 years ago and things have changed a lot since then - where surgery is concerned. But just because they couldn't "see" the endometriosis during your laparoscopy, doesn't necessarily mean that you don't have endometriosis.
Like I said - I've had laparoscopies where "nothing" has been found - only to then have others months, or even years later and endometriosis is then visible. They don't call this the enigmatic disease for nothing.
Some doctors do blood tests for something called CA125 - a marker for Ovarian Cancer - but it also can show "abnormalities" in the blood which can point towards endometriosis. It might be worth you asking for such a blood test.
I would also suggest that you try asking your GP to put you on the contraceptive pill & take it continuously - as you would if you "did" have endo - if your symptoms improve then it's an indication that something is going on with your hormones!
I'm so sorry that you're going through this & completely sympathise with you. It's horrid not knowing what's wrong and it's always so much easier to cope with symptoms when you have a diagnosis.
I wish you well & hope that you get some answers very soon. Please don't hesitate to contact me if you need more help?
Hi, just wanted to say I had the same thing happen to me.
Will try to cut my story short as it's a ten year long ongoing problem!
It took me 3 years to get my diagnosis, I had a lap and when I came round my consultant told me I had severe endo on my right side, especially my ovary and when he showed me the pictures I was horrified at how much there was.
Bizarrely after no treatment all my symptoms of endo seemed to vanish after my lap however by the end of last year they were back with a vengeance.
In May I had my 2nd lap and was told no evidence of endo was found and when I questioned the surgeon as to why I had so many symptoms of it he just replied 'I should count myself lucky and I was perfectly fine!
I left the hospital as an emotional wreck thinking people will think I've made up my symptoms and there was nothing wrong with me. I came on here and was relieved to hear I wasn't the only one that had this experience and was advised to go to an endo specialist.
The man I found is a professor in this field and once I'd presented him with my endless list of symptoms he put me on Zoladex which I'm due to finish next month and it looks like my symptoms are returning so he has given me the hysterectomy consent forms and is very happy for me to have it done.
Sorry this has turned out so long but what I'm trying to say is I felt completely devastated after my op but thankfully a lot of lovely ladies on here encouraged me to find a specialist so finally I can see light at the end of a very long tunnel !!!!
Don't give up, stand your ground and find a specialist. I really hope you get the answers you deserve soon.
Thanks for your responses and kind words, they really do help! I was back at GP today getting my (horrendous) stitches out and the lap report was in. I'm not sure who was more confused by the findings, myself or my GP...
Basically the report said no sign of endo but an enlarged and gas filled bowel which would indicate possible IBS. I, again, explained to my doctor that out of the 19 endo symptoms listed by Endometriosis UK I have 9, none of which are bowel or bladder related. She argued that it could be possible that IBS is making me think I have these other symptoms but I argued back that I have never had anything wrong with my bowel and experience no symptoms of IBS whatsoever. Anyway we're at a bit of a stalemate and I have come away with antispasmodics to try and treat this apparent IBS... This will be alongside tricycling the contraceptive pill (Jasmin), taking ibuprofen and paracetamol for the nightmare pain caused by the lap and my upcoming period and also ponstan for cramps. I am a walking chemist!
Thank you for all of your support, I'm still off of work (1 week and counting) and becoming more and more demented by the day!
Hi. Dealing with the same crap... Got my 1st painful period at 14y/o & can't remember 1 painless period since & I'm now 31y/o. I had my 1st (& so far only Lap) laparoscopy done 2yrs ago, & same as all of you, the OBGYN, ego performed the surgery came into the recovery room to discuss the findings & I was not only in excruciating pain, but I was tired & the pain meds they were giving me made me so mean, even I cringed at the way I was behaving (but couldn't seen to stop myself)... Then it was only compiled when he told me, like so many if you, that nothing was found... I was devastated, because I've spent so many days & so much time in the E'ER, OBGYNs, office, MRIs, Catscans, ultrasounds, blood tests, etc etc etc.... & had been already DXed with Endo, cysts & fibroids previous to the surgery (Lap), that I couldn't comprehend how he could say there was nothing! It was only later at my follow up appt that he took back his original statement & said they have protocol like everything & everyone else that they're required to follow & if there isn't a certain quantity of Endo, out pissing a threat to other organs or areas of the body, then it doesn't get removed... So he said even thoughwedidn't remove anything that's not to say you had nothing going on. In fact, you do have Endo & everyones pain threshold is different & it effects people differently... Whereas you might have a little you're pain might be worse (just because of where it's located & what it's pushing on, etc) than someone who had alot might not have little to no because of where there Endo is located... Understand?
My biggest concern was if I'd be able to have kids, because I've been with my bf for 6yrs & have had sex unprotected through out the months & I've never had an oopsy baby... Which my ex who I also was not the safest with, did have a baby... So the problems with me. But my OBGYN told me at my folklore up that there's no reason I shouldn't be able to have kids. However, as stated before, it's been 2yrs since my Lap & I haven't gotten pregnant. Not that we're actively trying, but we're not, not trying, if you catch my drift. I'm just beyond frustrated & the last 6 months I've been consecutively late on my period of anywhere from 10-14 days... Which is absolutely NOT normal!!! Somethings wrong to always be inthismuch pain & have Drs not seen to care about your fears & concerns with what's going on.
So even though I came on here to as top the everyone elses statements if you not being alone... I can't help but feel alone sometimes because of my age, the clicks ticking & so far I've been to & seen at least 10 different OBGYNS including specialists & no ones been able to offer up any explanation of what's going on with me or my body. So if anyone here can offer up any advice or ideas of what might be going on, they're all welcome! Thanks in advance! ~ Erin
PS. I'm 5'4", 115 lbs, never been overweight, but I've struggled with issues like acne that's predominantly centered around my jaw line, slow hair growth that's brittle & thin no matter what supplements or powders or vitamins I use... My nails are brittle & break easily... To me it seems like a hormone problem but because my blood work always comes back in the good zone, even if somethings a little high or a little low nothings ever further researched or singled out as the problem!!!
Has anyone ever clearly explained to you which of your bloods came back in the high, or the low, categories? It's a difficult one, clearly, because people's bodies are finely tuned, and each individual women will have a slightly different "operational" level for her hormones. I suppose what I am trying to say is that, although there are what are classed as "acceptable" ranges for responses to blood work, what is right for one women may not be for another. So, your body could be particularly sensitive, and you might be on the borderline low, or high side of something, and start to show symptoms.
For example, Haemoglobin levels in blood are generally considered "acceptable" for women in a range between about 11.5 and 15.5 g/dl (grams per decilitre). I have had readings of @ 10-11, which is seen by my G.P. as "borderline", but I can still be experiencing symptoms of fatigue and paleness that are common to full-on Anaemia. Perhaps that is some evidence that some people are highly sensitive? Furthermore, there are some inconsistencies on blood work results and how they are interpreted. The range of "acceptable" results can vary slightly from laboratory to laboratory (which provide your results). E.g. some labs can suggest a range from 11.5 - 16 g/dl for Haemoglobin.
Perhaps you need to ask for it to be made clear exactly what your results are, and to see if they remain consistent over time. Changes in results might suggest fluctuations in hormone levels, but this is best discussed with a medical practitioner, who can regularly monitor, and refer for additional testing if necessary.
Persistence may pay off. Like other women here have said, just because Endo has not shown up now, does not mean for definite it was not there. It may be present, and may show more clearly some time in the future. Or it may be that your symptoms are the result of something affecting another part of your body, but in a similar area to where Endo is commonly found. Stick with it. Keep asking questions, and eventually, with luck, you will get the right answers.
Best wishes,
E.
My first lap at age 29 showed nothing at, absolutely nothing for endometriosis. My Gyno basically told me it was all in my head (because yes, that pain where I can barely move or breathe MUST be in my head; just because YOU couldn't see anything). Fast forward about 5 years, I had another lap done. Guess what, I have stage 3 endo. My current Gyno (I been through soooo many) told me that just because they can't see it by just the naked eye, doesn't mean you don't have it. To truly find out, they need to take tissue samples and look under a microscope. Also, I have done some research; and just because the endo is tiny it doesn't mean it can't hurt severely. It just means your body is trying to fight the intruder constantly. Your muscles in your abdomen are rubbing against the wounds (they are rather like wounds too) and causing constant pain. You may just be in the beginning stages. Because of your family history, I'd be inclined to believe it is endo (or as someone else suggested, the Adeno.) Have you tried birth control to keep your period away? Have them try 3 months with NO period to see if that helps you. Also, I don't know how your insurance works, but can you go to a different dr. or a specialist?
Ladies, I suppose it's comforting in a way that so many people can relate to my issues but it's also so frustrating that we're all being treated in a similar way. Three months after my lap nothing has changed, I'm just getting on with it... I went to see the doctor a few weeks ago because I had a severe pain about 2 inches in from my hip bone which felt like something was going to pop every time I sneezed or coughed or just moved the wrong way even. I asked the doctor if this could be related to my other symptoms and, now wait for this... as I was en route for a run (obviously wearing running shoes, leggings etc) she asked what kind of exercise I'm doing, how much, how often etc then said I must have just pulled something... I DESPAIR!! At least I can see the amusing side, kind of, sometimes....!
Hey I am so pleased to have found this post. I am experiencing the same thing.
I have had chronic pain now for 4 months. Pain killers barely help. Have many of the symptoms of endo but my lap 3 days ago was said not to show anything.
I now have pain from the lap and still the pelvic pain. I too was also told it was IBS and to go to the gp. I have tried antispasmodic during the past few months and it doesn't help the pain. I too feel that telling work they are going to think I made it up.
Hi, I was in for a first lap yesterday as i've been getting mega pains since i was 15 but its been getting worse over the past year.
I had went to the docs who sent me for an ultra-sound where they found a fibroid but nothing else so I got sent to the gyno who done an internel and found nothing and said all the signs and symptoms lead to endometriosis but they would have to perform a lap to find out for sure.
I'm 25 and during my period I am crawling round on my hands and knees, dry gagging with the pain and it feels as though sometimes my heart will give out. When the surgeon came around to see me after the lap he said they found no sign of endometriosis. I asked him what he think it could be and he said if the pain continues then i should go back to my GP and it may be something related to IBS. I have never had any problems with my bowels and now feel I have just went through the lap for absolutely no reason at all and since they didn't remove anything the pain will come back!!
I know exactly how you feel, when I have my period I have to take painkillers as soon as I get it and all the way through or i'm in so much pain, I got pulled aside at my work by my boss in December when she said some staff have been talking to her and been saying they think I have a problem with taking too many painkillers!!! Another member of staff said that the pain was all in my head and to get on with it!!
I had a lap in May last year and they found nothing apart from fluid in my groin. I had an MRI in August because I was still in pain and it found cysts and endo that hasn't shown up on anything else. Ask for an MRI and demand it's looked at by a endo dr x x x
I just had a lap done yesterday, they said everything was clear but want me to get a MRI scan. My parents questioned why since I had one done last Aug which was clear apart frkm it confirmed I do have IBS. All my docotr said it was routine to make sure nothing else is wrong. I spoke to some people who also was cleared from Endo and none of them needed another MRI. Did any of yous get told this after surgery? I'm a bit worried they ain't telling me the full story. Also never got told if they took biopsies either.
I had a lap which was clear last month also and wasn't offered an MRI scan but I am going to ask for one because I've no idea what do to next or where to turn to try and get answers.
I was also booked to have an ultrasound on my kidneys done and this has been cancelled, I'm not sure why (I only found out when I called to find out the date).
It does bother me that some times with the time delay between appointments following laps and in between any part of the process that we're left wondering what's going on.
I'm just confused it's like they were not going into detail, my mum asked why they wanted me to get a head to toe MRI and all he replied was they wanted to make sure nothing else was wrong. I ain't going to worry about it now until I need to as probably nothing, he did say he would try everything to help with my pains. He's also puzzled as suddenly I lose weight and then my periods stop. Not had a period since December. Hopefully we all find answers soon, eh? Keep me up to date on how you feel and if they give you the answers you are looking for xx
Hi Aliesha. I know your post is 2 years old but I have just had a lap today after years of endo symptoms and the endo specialist even telling me that's what I had, to be told there was none there and I need to see a gastroentorogist for bowel related issues. He did say I had Adenomyosis but I the majority of my pain is in my ovary area and adenomyosis is inside your uterus. Did they ever find out what was wrong with you? x
Straight after my lap my consultant said no endo found in apart from one nodule he said my 'pelvis was clear' so I was really excited as clear tubes= good chance of fertility. but then when I saw him for the follow up these words were totally misleading as he dropped the bomb of me having adenomyosis (v close if not the same thing as endo but in my womb). Push for another appointment ASAP and ask for more detail, then push to have it summed up for you in a follow up letter if you want that. Every step is a struggle getting info about this disease, but I wish you all the very best.
i have a similar problem like yours , i;m suffering from debilitating pain everyday . i had a d -lap done last month . my ob gyn says no endo -pelvis is clear . she said it could be adeno or pelvic congestion syndrome . did your ob gyn say u have enlarged uterus , i have normal sized uterus -can adeno be found in normal appearing uterus ? i'm confused . pls reply
I don't know what might be causing your pain, but I wanted to let you know that you are NOT faking it. No matter what anyone says - family, doctors, friends - only you know your body and your pain, and you are NOT faking it. I've had too many people tell me the same, and it doesn't matter how the pain is happening in terms of this - it IS. Keep fighting until you know why, but until then, know that you are not faking it. Nobody would want this.
I have just come home after having a diagnostic laparoscopy and the surgeon said there was no endometriosis, I feel completely devastated. My periods are agony, it hurts to go to the toilet, it hurts to walk they are making my life a misery, the surgeon mentioned IBS and other bowel problems but I am convinced it is not bowel related, surely if it was it would happen all month long and not just the day of my period??
Oh my goodness, whatever it is that is going on with you, endometriosis or not, nothing and no one should make you feel like you are exaggerating or making things up! If anything, you've probably had to minimize to friends and family over the years just how much pain you've been in, because it's not easy to talk about or always met with sympathy. But as all the women on here have said, your concerns about pain are valid, and you should not have to live with it. I hope you can get some helpful advice and answers, but in the meantime, just be assured that there are lots of people who can relate to your experience and you definitely aren't wrong to keep searching for help and answers. GOOD LUCK!
Good grief!! I could've written this almost word for word... I had a lap last week and was fobbed off with "you have cyst, but it can't be responsible for your pain. Have you considered it might be your bowel? Any constipation? Hmm, no? Any diahorrea? Hmm, no? Anyway, it's not endo, probably your bowel - it can be affected by hormones you know".
I'm coeliac, so I know my bowels, and I know my sh*t!
I'm doing my research and presenting a visual chart to show pain v hormones when I have a post op follow up, to show that my pain is irrefutably caused by hormones!
I had a laproscopy done today.... the incision sites are completely fine... but THE GASSSSSS... holy SHIT THE GAS..... they do NOT prepare you for this kind of pain. Maybe I'm a wuss.. or maybe I was just full of more "hot air ;)" haha but I seriously have never experienced anything like this in my life. I feel like someone is stabbing me in the right shoulder and rib cage. It comes in waves and when it hits I literally can't breathe or move for like 5-10 minutes. AWFUL. awful. Would not recommend this procedure unless it is ABSOLUTELY necessary.. unless you are a G and can tolerate a lot of gas pain.
Well it is a very strange condition. I had absolutely no symptoms before my laparoscopy. One year ago an internist found a big ovarian cyst during regular check with an external ultrasound and told me that I should go and have an internal ultrasound. The gynecologist made it and she found one more, smaller on the other side. She told me that she has limited ways to diagnose it by the shadow of the cyst on the monitor and the way the liquid in it moves when she roles the ultrasound. Her opinion was that the big cyst is very solid and will not disappear naturally. She told me that I have to make CA 125 and HE4 tumor markers. The first was way above the upper limits which is a sign for malformation such as endo. The second was negative which, I was told, means that I don’t have ovarian cancer. The opinion of the doctor was that it I have endo (or a very strange dermoit) but only a laparoscopy can confirm her diagnose. I continued not having any symptoms and visited two more doctors which confirmed her opinion. And after two more periods my cysts have become bigger.
Now one year after my laparoscopy I feel the same- noting. Do I feel happy for not having symptoms? Yes, I thank God every day. Does this give me comfort that I am healthy? No, because pain is obviously like a fire alarm and with or without the alarm I can still have the fire inside of me. This is also very confusing.
No endo found in lap done by general gynae and then told I have possibee IBS and given laxatives and told to follow a diet, yet never said I had any of the IBS symptoms. The bit that irritated me the most is that there is no diagnostic test for IBS, you are just assumed to have it if they have ruled out other problems!
But since then i have beento see my gp and ask to be reffered to a BSGE centre (which are endo specialist centres all over the UK) and she couldn't refuse because we are all entitled to a second opinion.
Its unbelievable how many people have reported that general gynaes haven't found endo.
So fingers crossed they will find out what's wrong with me there if it endo or not.
I would like to know if those specialists have found the issue ? I just had a laparoscopy 3 weeks ago. As I just woke up from the op, I was told that there was no endometriosis but probably something wrong with my bowels. Like all of you, I don’t have particular problems in this area and I defined my think that the pain is caused by hormones and/or gyneco related.
The lap was very painful and I just got back to work so I would like to know if those specialists found what was working and if it was worth going to see them and going through another laparoscopy ?
Hi there, I've just come across your post, I can empathise with you as I had a laparoscopy a couple of days ago as both my GP and gynaecologist suspected that I had endometriosis. Afterwards I was told that they couldn't find any endometriosis and that the only treatment that they could offer me was psychological help! How can this pain and suffering just be put down to psychological reasons, I'm not imagining it!! Has anyone got any advice on where to go next??
Hiya, unfortunately not. I'm 2 years down the line and still suffering on. Constant blood tests and was back st the gynaecologist last week for an ultrasound which came back clear. Suspected PCOS but hormone levels all fine too over a three month period.
I asked the gynaecologist what my next step was and he said "be happy that I've found nothing". So what he means is suffer on in silence again! I'm finally giving in and having the Mirena coil put in and pray that it helps at least a bit!
I've been diagnosed with PCOS and IBS. I'm on Bentyl, medication for my bowel cramps and it helps, but my pelvic pain is still so severe. I've only had an external pelvic ultrasound and abdominal and pelvic CT which only showed cysts. I've been on the Depo Shot for a little over 3 months to see if stopping my period helped the pain, but it hadn't. I just had the laparoscopy and found no endometriosis. It's the same with me! I've been told that's it's just anxiety or IBS. My pelvic area always hurts, severe cramps and stabbing pain. When I was on my period I could barely move! Before the Depo I basically bled heavy none stop for at least 6 months. My periods have always been irregular and heavy and so painful. I'm a virgin, but using a tampon, having pelvic exams, etc is so excruciating I'm in tears.
What the heck can it be if it's not endometriosis? I understand It could be my IBS, but why does it hurt so bad? My mom and many other family members have severe endometriosis. All of their symptoms are similar to mine, heavy periods with huge clots and horrible pain. I feel helpless. As my doctor said, be glad you don't have it. Its sad that I actually want it so someone will believe me.
My family are starting to wonder if it's anxiety. It's not! As others said, it could be Adenomyosis. My doctor just blew that idea off and told me to go back to my GI doctor. What do I do, and what can it be if it's not endometriosis? I feel helpless! I'm so sorry you're going through the same issue and hope the best for you!
Have you seen an endocrinologist? Could the surgeon have missed endo lesions? Strange that your doctor was so quick to dismiss adenomyosis. Is he certain?
Yes I have an endocrinologist for the PCOS and hypothyroidism. My hormone levels are normal and I don't have excess hair like many with PCOS, just the ovarian cysts. I trust my doctor and have been with her for years, but she dismissed my pain as any gynecological issue and told me it's my IBS or anxiety which I did not like at all. I know the cysts can cause the heavy bleeding etc but not severe pain. She could have missed lesions, not sure. I just feel helpless and don't know where to go from here, maybe a second opinion?
I asked about an MRI or anything else that could explain my symptoms, but she just dismissed it. I've been looking up MRIs can detect the Adenomyosis, but she said she didn't think it was necessary.
I feel exactly how you feel constant pelvic pain, bad period pain and lower back nausea and a whole bunch of endo symptoms. I go in for my first lap on the 8th.
How did you get on? I had my first on the 7th - no endo! I could have cried. I have all the symptoms and feel like I bleed to death on my period. I have a follow up appointment on the 22nd so I am looking forward to seeing some photos.
Hey I had 1 op2 years ago told they could not find any thing feel crushed so kept back on at my doctors said it's in my head gave me pills any way kept on at them and booked for a 2nd op next month fingers crossed they find something good luck to you I know it's emotionally draing but keep fighting and don't give up ❤
I was originally diagnosed with endometriosis when I was 16 I had 2 laproscopies and both of them found no endometriosis. I have had tests MRIs ultrasounds I even went to a gi and had a colonoscopy recently nothing is going on apparently. However I get the worst pains they are so bad I have every symptom of endometriosis that you can think of: pain that mashed me vomit, horrible clotting, horrible back and keg pain, severe pelvic pain and so far nothing has worked. At this point if they can't find any I can't find anything I have been fighting for a hysterectomy because seriously I can't live like this anymore. I'm constantly calling out from my job because of the pain I'm in. I even have a gofundme account because I need money for my surgery since health insurance is quite expensive, and even though I have it, I still have to spend a 4000 dollar deductible so the surgery is going to cost me more than I bargained for if my insurance even authorizes it at all . I don't feel like this is all in my head and neither should any of you. This pain is horrible, its debilitating, and it really has ruined a lot of my life.
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Laparoscopy found nothing - symptoms all point to endometriosis
Recovering from 1st Laparoscopy 
Laproscopy found endometriosis!
