Want a second opinion on diagnosis

Since last July, I've been suffering from chronic pelvic pain. I constantly have a dull ache similar to period pain and often have a burning sensation in the same as well - normally to my right hand side and it gets worse the week before, during and for a few days after my period. I get shooting pains down my legs, back ache, and pain when opening my bowels. I'm also incredibly tearful, although this could be from the stress of it all. 

So far I've had two regular ultrasounds and two transvaginal ones, all of which were apparently normal. I'm currently taking large doses of cocodamol, tramadol, naproxen, amitriptyline, and the combined contraceptive pill just to get through the day. 

Last week I had a laparoscopy to see if it was endometriosis but the consultant failed to come and see me to tell me what happened after. After calling and emailing and calling some more, I had a short and blunt email saying "your condition is pelvic congestion syndrome". But I don't think this is right given my symptoms - it does not get worse standing or walking and I'm 24 and have never been pregnant for starters. I also spoke to my GP who said this diagnosis is sometime given when they don't know what else it could be.

As this man failed to listen properly to my symptoms I'm worried he's put me under this category because he doesn't know what else it is. Even my gp said that may be the case after looking again at my ultra sound results. Has his happened to anyone else?

11 Replies

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  • Aarrghh!!! When will incompetent and disrespectful medical care end? Unfortunately, this is the experience of many of us, and not just with pelvic pain. Almost always helpful to get 2nd and 3rd opinions, which may be expensive. I also like to get opinions from a physical therapist and some type of medical body worker. Research has shown that connecting with a skilled and caring practitioner is often more important than specifically the kind of specialty. It also helps to have a caseworker or psychotherapist who can support you through this traumatizing maze and help you coordinate care options.

  • Hi vickiieemma

    I have seen your message this morning so will try to help as I can see that your recent surgery has caused some anxiety. Have you been given a follow up appointment to discuss the outcome of your laparoscopy?  It mightbe best to wait until you have had this as the diagnosis given in the short email might make more sense. During your appt the consultant or registrar should show and talk you through your pictures that were taken during the surgery which should show enlarged blood vessels in the pelvis. 

    Whilst many sites online or in medical books suggest that pelvic congestion syndrome only occurs after pregnancy this is in fact incorrect. It does occur in those that haven't been pregnant before. It's likely pregnancy is mentioned as that's when many women become symptomatic or that's the group that is frequently reported on in clinical trials/comes forward for treatment etc. There is some controversy as to whether PCS does cause pelvic pain by some researchers but if you think of it as varicose veins in the pelvis then it does make sense that it could be a cause of pelvic pain in some females. There is some good information on the British Society  of Interventional Radiology about pelvic congestion syndrome and possible treatments you can try.  Their website is bsir.org/patients/pelvic-ve...

    Patients very rarely fit neatly into boxes when having a medical condition and some of the symptoms match what you have said are your symptoms.  

    The term pelvic congestion syndrome isn't likely to be given when they don't know what it is so not sure why your GP has said that.  The term chronic pelvic pain (CPP) can be used when there is no underlying condition(s) found but equally can also be used when conditions are found.  In many women the cause isn't known or it's the result of more than one condition. I myself have more than one cause and it's very well recognised that this is often the case.  I have endometriosis, adenomyosis, interstitial cystitis and pelvic floor dysfunction.  It maybe that you do have a second or even third cause of your pain which aren't necessarily gynaecological in origin but are known to be made worse during periods because of the influence of the female hormones IC, IBS are known examples although there are others.

    I'm just wondering if the short email you received might have be written by a consultant who was in a rush and didn't have time to write a detailed reply so it came across blunt and wasn't their intention. Consultants or members of their team don't always come round after surgery although many do and again there might be simple enough reasons - they'd been called to an emergency, they were still in surgery as some patients may have taken longer they anticipated, they had an afternoon or evening clinic.

    Also if you aren't happy with the diagnosis or feel that you may have other conditions missed you can always ask for a second opinion.  For me personally I would wait until I have had my appt as it might be helpful to you and you can discuss any other symptoms you have that you might have forgotten to mention previously or have just become obvious to you.  It might even be a useful appointment in itself as to suggest other avenues for you to explore.  

    Between now and your appointment if you have one it might be useful to do the following:

    Make a list of questions you'd like answered i.e how are you going to treat the PCS? Is it possible something else is causing my symptoms besides the PCS?

    Make a full list of symptoms, do you have constipation or diarrhoea that might suggest IBS? This can also be a common complaint with other conditions and sometimes only appears during periods, has your bleeding pattern changed at all etc

    Keep a detailed diary of your symptoms along with your period.  Many websites do these charts and you can make your own based on these or use theirs. I've used one previously and it was helpful.  Usually they have a full calendar month on each section and you usually write down on each day your symptoms in one box, in the section underneath if you are on your period etc.  This can help establish if there is a pattern to your symptoms.

    If you haven't been sent a follow up appt ( it might be worth while ringing appts to see if they have one booked first) you can always ring the consultants secretary and ask to have one as many consultants are happy for you to attend the clinic and answer your questions.

    I hope this helps and let us know how you get on

    Alaine

  • Hi Alaine, 

    Thanks so much for your detailed reply, I'll definitely have a read through that link later today. 

    I have a follow up appointment at the end of May and another appointment in June for some reason. I've spoken to my own GP to try and get a bit of reassurance as this whole saga is causing me a lot of anxiety and distress, and I've started having panic attacks. I started a new job recently which I love but despite being on five different medications and taking 16 tablets a day minimum, there are still days I can't get out of bed. I'm just worried that I have a six week wait to see a consultant I don't feel I can trust, to then have to go through the whole process again with a new consultant for a second opinion. 

    Sorry, I've become so ranty since this whole thing started and reading about the ridiculous wait most women have to face when thy suffer from pelvic pain! The amount of times I've been told to take Gaviscon from doctors who aren't listening is becoming daft!

  • I was crippled at 24 with just one semester of college left before i was going to graduate and start world travel... I understand the frustration,,,,

    In certain pelvic/pudendal cases if it is entrapment caused by muscles then stress and anxiety can cause a cycle that increases the pain by triggering the tension in the unconcious butt muscles that we clinch.... Just think about how in certain situatiions you just clinch up for some reason or another....  So pain causes stress anxiety that tenses the tissues which causes pain and makes a cycle of suffereing... It is what i fight every second of every day.... If it is this then u would nee what i need... a anti axiety medicine... zanax... clonazepam... klonopin... i would say try to try it from some doctor with a soul....

    we deserve these medicines far more than people that freak out over what is nothing compared to us... hope this helps... it could apply to u if u have a certain type of entrapment... which is common for us....

  • I am taking amitriptyline on top of various other medications for pain relief but believe that's also used for anxiety. 

  • You are right Amitryptline is used for anxiety and depression but at much higher levels than for pain relief although it's well recognised that pain generally can cause anxiety and depression which can then have an impact on pain levels. I was recommended to use mindfulness meditation by my consultant and find it very useful 

  • i took a mega dose of amitryptline to let me sleep for a few years till i was recently cut off from everything...    :.(

  • yes... it is helpful for kinda chilling u out at sleep time... I should be on it right now... was one of my medications... the evil poor doctors in texas are killing every sufferer right now by cutting us all of from every single medicine we were on.... i only have neurotin instead of the several meds i need to be on... have taken about 20 of those horse pills today... it is a massacre that they are committing over here now... it is like if the Nazis took over the medical system basically... evil tyrants dictating political medical laws designed to punish chronic pain sufferers....

  • Unfortunately it isn't just Texas. Our wonderful government has done some studies and they are trying to kind of phase out different drugs especially narcotics. My pain doctor has told me that it is possible that we won't be able to get any narcotics for longer than 3 days in about 4 or five years. The government from the same study is recommending other forms of treatment be studied. For example spinal cord stimulators and things along those lines. All this due to illegal use of drugs. So the people who do things illegally especially the younger generation are causing us to lose pain control methods. I believe their study was conducted in 2010. It also showed that geriatric patients in general lost two years of life who used narcotics. But I say quality of life is so much more important then long life. Without my medication I would not have any life. I'm so tired of doctors. Pain, being tired and struggling to get through each day. The fight is hard but we have to hang in there. Our family's and Friends still need us even if we feel like they don't. Hopefully we will be able to affect change in our government at some point. Get some excellent doctors who see the real need. And figure out a way to get quality Medical Care. I know it isn't happening now but I hope it will in the future. I will admit that there are a few doctors out there who go the extra mile and truly care. That is where this site comes in helping us to find help. Like the old saying word of mouth is the best referral. Thank you all for your input.

  • it is about quality of life... i have been kept in this place cause they would rather us drag out on a lower quality of life than risk anything....  You are preaching my beliefs... Agree point by point.. Sermonized about the same aspects...a long life or a good life... there is no comparison ....what we should risk should be left to the sufferer... when the suffering is off all the regular pain patient's charts on the reality that "WE" deal with... 

  • oh for a pier to hop onto... betting than sitting in a roasting fire...

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