i'm new and feeling desperate!

hi all, I have come to the stage where I need support for what I am going through. Friends have been helpful but they don't understand and are sure to be fed up listening to me going on and on. I have more or less been in pain since August. The year before I also went through a few months of pain. This time is doesn't seem to be going away.

I had laproscopy in December to try and find a cause for the pain. It came back that I had adhseions on the back of my uterus and polycystic ovaries. The doctors are telling me that this could not amount to the pain I am in. Every time I go to the doctor I am just given a new painkiller to try.

The only thing that seems to work is the Oramorph but then I am unable to do anything else. It looks like my job are trying to get rid of me because of all the time I have had off and I have also missed nearly all of UNiversity this year.

Doctors are now trying to say that the pain is in my head!!

I find this very hard to come to terms with as the pain is so bad, I am only 27 years old and feel like the rest of my life is going to be like this. I feel hopeless and that I have no control over my life. This week I haven't been out of the house since Saturday. I feel so alone.

Even when I do go out it can't be for long as the pain gets so bad.

Please help

13 Replies

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  • Hi,

    Does activity trigger the pain and does it ease lying down ? Pelvic adhesions can cause immense pain. Scar tissue/adhesions can even trap nerves. Has anything been suggested for the polycystic ovaries ? Have you seen a pain specialist ?

  • standing or walking is worse. Lying down really helps especially with a hot water bottle. I am on metformin for the pcos and hopefully i am been referred to a pain clinic. Apparently the waiting lists are really long.

    During the lapro they separated the adhesions could the pain be back already? Only had it done in December.

    Thanks for getting back to me

    x

  • Where are you being referred to ? was an adhesion barrier used in the December surgery ?

  • A pain clinic. Not sure if barrier was used.

  • I feel your pain and hope you hear from the pain clinic soon. Try and look everywhere around you that you can get to via bus, train or by car/ lift from a friend. Sometimes the doctors just put you in touch with nhs services really near by?

    I have also been diagnosed with PCOS and have been in pain for nearly a year now- Evan the specialists keep saying is 'it shouldn't be causing pain!' ..... Like that makes it any better. The only thing that helps me is a hot water bottle and codine to knock me out. Not ideal.

    If anyone has any advice it would be really helpful. Gynae reluctant to do a laparoscopy until she has ruled out early onset menopause.

    So fed up :(.

  • Hi kelmcn, my name is Kim. Where are you feeling pain exactly? If you are uncomfortable answering this on the post, you can email me kim@take-actionfitness.com. Were you diagnosed with vulvodynia, vaginismus, dyspareunia?

    I was in pain for over a year and a half, and am now pain free for the last 4 months. Went from very uncomfortable sitting (burning, inflamed) to absolutely no pain. I was diagnosed with vulvodynia and vaginismus.

    I would love to help you. I am a fitness professional and I am currently changing my niche to helping women with pelvic floor pain.

  • No I haven't heard of them. So far I am undiagnosed and been told I may just have to live with it. Don't feel like a get a burning sensation. Just sharp stabbing pains and sometimes feels like spasms

  • Your post is very similar to me! (im also new..this is my first visit to this site) I had a laproscopy in Jan following 2 years of pain (had 2 previous c-sections 7 and 3 years ago) and told that the adhesions are tangled around my ovaries which explains the pain I feel during ovulation (can make me pass out the pain gets so bad!) and there is nothing they can do because it doesnt affect my bowel and Im not wanting anymore children.

    On bad days I curl up with a hot water bottle because it helps. Sex is painful and it is affecting my marriage. My hubby is very understanding but my complete lack of self esteem following 2 years of this is really getting us both down. I dont feel like me anymore! Nobody really understands which is why I came here. I tried CBT and I cant get on with it...could just have been the male/female divide making me uncomfortable so I have asked for a female therapist. I have been to the pain clinic and im taking tramadol and targinact (oxycodone and naloxone) for when pain is really bad. I have a tens machine but it makes me incredibly concious and when I am already feeling low it makes me feel worse. (hate being attached to a machine and hate seeing it under my clothes..it does work but only for short periods of time).

    My hubby thinks that I should get some counselling. I constantly feel like im a failure. I feel like I fail my husband, and my children. I dont know where to turn next. The gynae team have discharged me because there is nothing they can do. I have to hope that the pain team can help me more. Sorry to hijack your post. x

  • I know it's awful. At my wits end. Been told it will be months before pain clinic. My whole life has stopped cant work or go to uni x

  • Hi:

    I too am new to this site and can relate to kelmcn's issues, particularly when being told that its all in my head. That's funny when I think about it, because I didn't fully realize that unrelenting, doubling-over, lower abdominal pain caused by a giant ball of pelvic adhesions could also make their way into a person's head. I feel as though no one understands what I am living with, and I am fast losing hope that it will ever get better. The only thing that relieves the pain is Percocet, and my doctor doesn't want to give it to me anymore because she is now claiming that I have an addictive personality. That's also funny when I think about it, because its the only thing that works to manage/ease the pain, provide some quality of life, and allow me to function as a wife, mother, and worker. Yes indeed, addicted to two perc's a night before bed, although due to recent kidney stones and the pain that ensued with those, I ended up going through my last rx rather quickly. At least I was a bit easier to get along with at home, though.So, until they come up with something else that helps me, I guess I'm expected to spend my "life" rolled up into a ball on the floor in agonizing pain or clinging on the walls at work as I make my way down the hallway to the washroom whenever I'm having a flare-up. Essentially, my symptoms equate to one long, unending, never-ceasing labour pain - you know, the kind you get after the water's broken but before you get the epidural. I feel as though something wants to "pop". I've been told that my last CT scan showed numerous ovarian cysts and from what I understand, once they've ruptured, the scarring begins again. In a nutshell, I've been seeing this doctor for 25 years (I'm 47), and my entire history, aside from a family physician/patient relationship, has revolved around pelvic pain. Ovarian cysts, dysmenorrhea, oligomenorrhea, multiple laparascopies, tubal ligation, partial hysterectomy (ovaries intact, now perimenopausal). The most recent "explanation" is that its due to the perimenopause, but that doesn't explain my past pelvic pain history. I was supposed to have been referred to our local pelvic floor clinic a year-and-a-half ago, but nothing came of that.

    Did I mention that due to all of the adhesions, I was admitted to emergency due to a bowel obstruction as well? No? Well, I was and of course that surgery also caused more scar tissue. Btw, the surgeon is male, as is his surgical partner as well as the doctor who performed the hysterectomy. None of them are willing to open me up again to see if there is any way the adhesions can be removed, or if there is nerve entrapment or impingement. The pain radiates across my lower abdomen, into my pelvis, sometimes into my left hip and around, and can cause some pretty interesting and rather jolting rectal spasming. You know the kind of spasms that stop you in your tracks and its all you can do not to physically twitch and jump around insanely? Yeah, those ones.

    All of this has been explained to all of these doctors, but I now feel I am no longer being heard. Actually, I'm starting to feel as though I'm getting on their nerves.

    I've been referred to a pain clinic, but its at least 18 months from the referral date until a person gets to meet her pain management team. This particular pain clinic is more geared to people with musculoskeletal pain and those with headaches. Not a lot for pelvic pain, unfortunately. However, because I feel I am getting the push from my own doctors, I've started doing my own research. Apparently, there is a pain specialist here in my city who knows a lot about pelvic pain and who also happens to be female. My question to you is do I ask my doctor for a referral? This specialist is exactly the type of physiatrist I've been asking to see; however, I'm confused as to how I was able to find her (thank God for Google), but my doctor's office couldn't.

    Anyway, I'm sorry for babbling - I'm just so grateful and relieved to have found a network of people who are living my life and who understand exactly what I'm going through. To you, though, kelmcn, I am so sorry that you are having such a hard time and at such a young age. I am pulling for you and will be thinking of you. Please keep us updated with your progress.

    Thank you all for taking the time to read my first post and any suggestions or advice you might have are more welcome than you imagine.

  • Keel man, can you pin point the pain or does it radiate? You might find a pelvic spec.for internal blocks.NEVER let them do this while awake.It only takes 5 mins. Of prophophal .ONe cannot bear them awake.Ive had as many as 60 at one time! Judy r

  • I feel for you I'm exactly same had same ops but I have pid scarring and adhesions I'm in pretty similar pain I'm 23 and I feel that km not taken seriously cuz of my age tramadol doesn't always work oramorph does they won't let me take it home tho for unknown reasons x

  • Has anyone had or heard of these 2 tests;

    PNTML= Pudendal Nerve Terminal Motor Latancy or

    MRN= Magnetic resonance neurography.

    And if anyone has had them what was the end result??

    Am desperate at needing answers after 6 long years of terrible pain.

    Plz. help

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