I had a Laparoscopy a week ago for suspected endometriosis. I have all the classic symptoms I was really hoping that the operation would give me a diagnosis and that something positive might be done during surgery to rid me of the painful pelvic pain that plagues me every month.
As I was recovering on the ward the consultant came round and informed me that no endometriosis was found and that everything looked healthy and a referral had been made for me at a pain clinic. I know that this should make me happy and thankful that I don't have endometriosis but I feel that I am back to square one with no explanation for symptoms that see me struggling to cope every month.
Since it was suggested that endometriosis was the cause of my pain about 3 years ago I felt convinced that this matched all my symptoms and must the reason for the pain, now that that has been dismissed I feel a bit lost and almost as though people must think that I made it all up and there is nothing wrong with me. I went to see my GP yesterday and she basically told me that I have had all the necessary tests and that it is probably the end of the road in term of trying to get a diagnosis! I feel really let down and as though I have been left to deal with my painful symptoms alone.
I am glad that I don't have endo and I am sure that there are lots of women who would love to be in my position, but I feel really low and apprehensive about the future because I know the pain will still be there.
I was just wondering if anyone else has experience of this, advice and help would be great!
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MANDAHARTLE
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So sorry to read your message ..I am an older person possibly than you but my exsperiance with doctors is mostly hopeless for years, sorry to seem pesamistic to you .
.I have spent lots of money seeing consultants to be passed to another and another so sees like money money ...my conclustion now is and with one of my doctors is adehtions )sorry for the spelling) which you get with ops of anykind will give you those.. and then to have then got rid of which they do not, as they come back,
I live with pain as many others do so that could be your problem!! though they should have been seen on your exsamination though perhaps did not tell you . ..I feel it is a not talked about issue as I belive many will agree as they do not know how to avoid it .....do not feel lonely with this as you are not on your own ..you may find many answers from others who know about the subject...Good Luck Margaret xx
I have just had a TAH/BSO for chronic undiagnosed pelvic pain. I was told not worth investigating, but now turns out I had enlarged poly cystic ovaries and significant adhesions on the left ovary.
It's hard but persevere , the pain clinic may give pointers to pain.
A "negative " laparoscopy" is very common and I'm sure you feel you feel let down. It is worth requesting a copy of the surgeons report of the surgery AND the letter to the GP AND the referral letter to the pain clinic. There may not be any mention of endometriosis but adhesions may be mentioned somewhere. Adenomyosis is another cause of severe pain that may not been seen during a laparoscopy. This would also be useful for the pain clinic/specialist to know about and it may have to come from you and your knowledge. Where did you have your surgery ?
Thanks for the repsonses, I am still waiting for the letter containing the surgeons report and it's now a month after the surgery and I have still not received my referral to the pain clinic! I have looked into the symptoms of Adenomyosis and it does sound very much like the symptoms that I experience each month.
I had my surgery at The John Radcliffe hospital.
I just started writing a blog about my symptoms and experiences, this is the address if anyone is interested in having a look!
I had negative laps was told it was nerve damage etc.
I finally feel vindicated that I was right and that there was a problem!!! Just needed the right consultant, GP and weirdly a very experienced ultrasonographor, who was willing to question previous findings.
Hi, I have had Endo removed via laser in a laparoscopy and now still suffer from the same symptoms, I have leg spasms and am convinced there must be some nerve damage. Do you mind me asking who your consultant is? I'v ehad 2 years of being fobbed off by endless Dr's and GP's and pain clinic cant see me for another 6 months. Any advice would be really helpful. Thanks
I am in kent and have seen them privately. At the Chaucer hospital - it was the only way I could answers previously was told it wasn't their problem as I didn't have endo (though had all the symptoms)
It turns out I had PCOS and adhesions, but I had PID and damaged tubes previously!!
Wow ive wondered why I get leg spasms I too suffer with pelvic pain and had an endom several years ago, thanks thats just helped me answer one of my life mysteries!
My advice is keep going - if you dont feel right, then something isnt right. It took me years to get my endometriosis diagnosed after being rejected several times, or told its other symptoms. Im now in my forties and suffering again moreover on a larger scale, but nevertheless I know how you feel and how lonely it feels too, keep strong x
Hi Manda; Have you consulted a urogynocologist? They specialize in womens pelvic issues. There are not many of them. After 18 months of 24/7 pain, I found a reputable website and they recommended I see this type of specialist. He knew exactly what my problem was and how to treat it. I hope you find relief soon.
Thanks for your response, I will look into this! Do you mind me asking what the problem was and how it is being treated? I have basically been left to deal with this by myself it feels like the Dr and the consultants have given up! I am finding writing down my experiences in a blog quite therapeutic, its good to get it all down on paper;- pelvicpainisapain.blogspot.co.uk
Hi Manda, Your right about the Dr.s giving up. They are human and many of them don't care to keep up with advances in medicine & health care. I assumed I was dying and they had washed their hands of me. I went on a reputable web site, (John Hopkins University of medicine) and put my symptoms in and only one thing popped up. "Chronic Pelvic Pain Dysfunction." It said this was treated by a specialist called a urogynocologist. I located one, went to him, and he said that's exactly what you have and most general practitioners are completely unaware of this diagnosis. In 2007 I was treated with trigger point injections straight into the pelvic muscles. My last treatment was done with botox. Stress is a big contributor to this problem. I have gone as long as 18 months between treatments and as little as three months. The relief of the 24/7 pain was worth it all. Sometimes, the pain doesn't leave completely and you need pain meds for "break thru" pain that hits, but gradually subsides over a period of hours. Hope this helps. Take control of your health & good luck.
Just to reiterate what others have said. . . don't give up, and try not to feel excluded from help. There is help out there, here in fact
I have also felt totally alienated from finding good medical help, not from places like this but from the medical profession itself, and that is private as well as NHS.
I don't know a lot about Adenomyosis but as Judy said it is definitely worth chasing that diagnosis up, especially if the symptoms are monthly as you seem to be saying.
What medication do you take? Does anything help at all?
As mentioned don't give up and do take up the pain clinic appointments, they were actually my own salvation. Not trying to build your hopes up unnecessarily but after 5 years of almost no help, as everyone locally was convinced my problem was lower spine related. In desperation I asked to be referred to the pain clinic, (my GP has been rubbish) not expecting anything other than some cognitive behavioral methods of coping with pain, my pain consultant has turned out to be absolutely fantastic. I can't praise her enough.
My problem is pelvic (not spinal) nerve entrapment, she actually listened to what I was saying (I was amazed!!) Sent me for nerve conduction tests and a scan to conclude that I did indeed have pelvic nerve entrapment. . . .it has only taken 5 painful years!! I am to have a nerve decompression op on September 20th and this is only because of the pain clinic, nothing else.
I will get some cognitive and meditation help too and I have just had a letter for a physio appointment seven days post op. This is just in a smallish local hospital but so far the pain clinic has been my saving Grace. Hope you find some better answers soon.
When I read your 1st post it was like I could have written it myself. I have had the exact same experience. After my 2nd negative laparoscopy in July they are referring me to a pain clinic. Neither my consultant or GP are being very supportive and both have refused me an MRI to check for adenomyosis. I have been told to stop obsessing with finding what is wrong and just learn to deal with the symptoms. That is easier said than done when you wake up in pain most days. I am hoping the pain clinic is supportive because I am already on my 2nd Dr surgery and 3rd GP. Don't think I've got much fight left in me to be honest. Take Care x
Thanks for your reply, Sorry that you have been through a similar frustrating experience. Its awful when you know that something is wrong with you and no one is prepared to investigate further and we are made to feel that it's all in our heads. I don't think that its normal to be in pain, constantly tired and feeling unwell all the time. I am still waiting for my pelvic pain clinic appointment there has been in a delay in getting my referral. I am hoping that further investigations will be done at the pelvic pain clinic as all the Dr seems interested in doing is giving pain killers to mask the symptoms.
Have you been to see a consultant privately? I did this last year as I wasn't getting anywhere with my Dr and the waiting times for hospital appointments were really long. Although it was expensive it meant someone actually listened to me and the consultant was able to refer me back to the hospital.
I hope that you get some relief with the pain clinic, don't give up, I know how exhausting it all is.
keep in touch and let me know how you get on, you can contact me through the blog, address is in previous posts.
Good Luck, and thanks for responding its nice to know that I am not alone.
Hi just to let you know that my pain levels have reduced thanks to surgery, please keep goingnitsma tough road and there are many umps and dead ends, but hopefully you will find answers....
I fought with GPs, consultants and others but I can say at this moment it's worth the tears and tantrums. Xxx
This is EXSACTLY what happened to me It's now two months after my laparoscopy and have the same pain, it's so frustrating and I'm iv Ben been bullied by people saying I made it up and I just can't Handle a bit of pain. Left with no explanation and back at square one. The only thing I can think could have caused it was that I had a mirena iud and the pain and problem started when that was removed, now it's 2 1/2 years later and I'm still in pain
I have this same problem, I have been diagnosed with mild PCOS (which i don't believe) as I no longer have periods at all and im only 22 and my testosterone is only slightly heightened, but I also suffer from daily pain so I had a laparoscopy 2 weeks ago and they said everything looked fine and healthy. But 2 years ago a had the copper coil which caused a lot of pain and long periods (everything was fine a regular before this) so then got it removed after 2 months of having it and since then no periods, crazy hormones and emotions everywhere and constant pelvic pain!
I had a negative result of my laparoscopy as well, and had the mirena coil fitted. It became forced out by my body less than a week later and I had to go to A&E to get it properly removed which was incredibly painful. Since then I have been on the Pill and my symptoms have been worse than ever!
Hello, I can see this was from years ago, but I wanted to tell you that I am in exactly the same position as you were now. I feel so lost and like I'm going crazy as I have been told the findings of my laparoscopy were "essentially normal", and I have tried all kinds of painkillers and am on the Pill to try to manage my symptoms but it has not helped so far and I feel so low not knowing what's wrong with me and what I can do to feel better. If you are still responding to this message, please let me know how you are now managing your pain. I wish you all the best!
I completely understand your predicament. I have had "unexplained" pelvic pain for about 6 years now . . . had several uterine fibroids removed 2 years ago, and that helped somewhat, but did not completely remove the pain. I think the hardest thing is when people can't define a reason for the pain, and you start to wonder yourself if you are making it up! I was wondering - now that several years have passed since you first posted, have you had any more success with your treatment? My condition is "stabilized" now (due to nerve blocks and medication) - but I still live with a lot of pain, and I would love to find more relief!!
Hey, I would really recommend checking out the Curable app and books by Dr Sarno. My pelvic pain improved as a result and I’m now almost fully pain free
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It's now two months after my laparoscopy and have the same pain, it's so frustrating and I'm iv Ben been bullied by people saying I made it up and I just can't Handle a bit of pain. Left with no explanation and back at square one. The only thing I can think could have caused it was that I had a mirena iud and the pain and problem started when that was removed, now it's 2 1/2 years later and I'm still in pain
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