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i've had enough, feel like crying but thats pointless(21 Posts)
I have pain, where my ovaries are, but also pressure on my abdomen, in my bottom, shooting down my leg..its been going on for years. Ive had laparoscopy, scan, Ive had implant in, implant removed, Ive been prescribed tramadol..got addicted...come off it (hell). I still, have so much pain on my lower abdomen, also very severe mid cycle pain that last for longer than mid cycle! Its been going on years, I just dont know what else to do as doc says nothing wrong. I currently take naprosyn if pain is really bad and was prescribed codrydamol..but find these just make me crazy and have a bad head and cant sleep. The pain lately is so bad I could kill myself. walking is hard when pain is bad and i just want to cry but cant allow myself to. Im really not knowing anymore what to do. tramadol worked pain wise but was addictive. codridamol is like tramadol but scarier and i cant cope with it.
Could it be sciatica? I have had this and have been helped by visiting my Oesterpath
I would suggest you keep a daily pain and symptom diary if you have not already started one of these.
What did the previous lap operation show if anything?. Just because they did not see endo does not mean to say it is not there. It can present in many forms.
Your GP should refer you to a gynae as a matter of course, preferably as well a gynae with a specialist interest in endo. This is well outside a GPs remit, how can anyone possibly tell you that nothing is wrong given all those symptoms. Also endo can go on for years undiagnosed and it is a disease very much underdiagnosed by the medical profession.
Your symptoms to me (and I am no expert but could relate as have had very similar) read like endometriosis. The mid cycle pain, pain down legs (endo on sciatic nerve) and in bottom (that has been described as javelin arse) are all indicative of endometriosis.
www.endo.org.uk is a useful website.
If you're sure it's coming from the ovaries and womb have you discussed a total hysterectomy with a gynea?
It definitely sounds like endo. I have it too and it's miserable. I'm currently thinking about different options following three laps. Definitely push for a referral as there are consultant gynaes out there who are experts in this field. The endo website Attila mentions is good for finding out more about it and for support.
TheAccidentalExhibitionist A hysterectomy is an option but won't solve theproblem unless all endo is removed properly first from all areas. I have been thinking about it myself but I believe I have adhesions and endo outside the womb so I'm not sure what to do.
Hope this helps x
Also endometriosis can be on the intestines so a hysterectomy may not cure all the ongoing problems with regards to endometriosis. The ovaries can "feed" the endo so with a hysterectomy these can be removed as well thus putting the body into surgical menopause.
thanks all for replying, i have seen gynae many times, his area of expertise is endo, 1st course of action was he wanted me to try being on the pill...which I did and it didnt really help and caused me to non stop bleed for months, so then the next thing we tried was the implant ...which again made me bleed on and off for a year and was so bad that when I did exercise it made me bleed...this combined with tramadol helped the pain but I couldnt cope with the hormonal headaches and the way it made me feel so emotional. The pain continued so next course of action was laparoscoy. They removed a small nodule and saw some evidence of fibroids but no endo or anything else that they could think would cause the pain. We discussed a hysterectomy, but I am only 33 and worried about doing something so drastic so young...however when Im in pain, its all i want to do, i feel like i wish i could scrape out my insides.
Thank you for your replies, I will look at that website. My gynae wants me to have an injection to stop ovulating for 3 months as he thinks I am just hormonally sensitive, but Im not happy to do this as it is essentially like having a menopause for 3 months...and I feel crappy enough, I dont think i can cope with it right now.
Okay, this might not help, but it's worth trying. Get some Black Cohosh. It's excellent for uterine problems. Obviously, it can't treat things like fibroids etc. but it's very good for settling things down and balancing hormones too.
I have endo too. I was fortunate in that I've had nearly two years relief from a laparoscopy and hystoscopy. It's all starting again now so I can sympathise. I found acupuncture helped. I had a few sessions and had a massive mid cycle bleed and then my body just seemed to sort itself out. I've also tried homeopathy and I felt great while I was using it.
My friend had endo which was helped by acupuncture.
I would seriously consider now obtaining a second opinion; it sounds like the gynae wants to put you on Zolodex or something of that nature. That will send your body into a menopause type state.
Am not suggesting you did not see someone good but some gynaes are definitely better than others when it comes to such issues. I would look into seeing a cons gynae with a specialist interest in endo (ask them outright about their management of such cases) as well as up to date knowledge, what this person has suggested to date has not been all that successful. Not at all surprised to see you do not want the injection, zolodex if that has been offered is quite powerful stuff.
BTW did you have a follow up appointment ideally about a week post op to discuss the lap findings?. Did they discuss at length the state of your uterine cavity, rectal area, pouch of douglas, bladder etc?. All these sites can harbour endometriosis.
zolodex...yes it was that I think. I've seen the 2 main gynaes at my hospital, and the one that had me go for lap is supposedly very good. The other was an absolute bitch to me, told me I was being too sensitive and that there was nothing to indicate a problem. After my lap, i was told nothing AT ALL. I was sent home with 3 holes in my abdomen and no idea what had happened to me! When I rang to find out because i was in considerable pain in one side I was told that something had been removed but to go see gp to discuss. Took weeks to get an appointment and then gp told me nodule had been removed but was nothing, she also said I had enlarged uterus and fibroids. When I went back to see gynae I only got to see an assistant who basically told me that the fibroids shouldnt be doing anything to cause pain.
I just dont know anymore, all I do know is that it isnt normal to be in this much pain. I have the odd month off, but generally speaking I have pain for most of the month with maybe a few days respite. The worst is when I ovulate (which I know is called middle month pain). My pain cycle generally goes like this -
Period ...weirdly isnt that bad, but if it is, its really fucking bad! lasts for 3 days.
3 - 4 days of no pain
pain starts as pressure and heavy feeling on uterus for a few days which builds and builds until pressure is on uterus, bottom and heavy in legs.
middle of month pain starts and I can really tell which side Im ovulating on! Feels like something is twisted up inside me, at same time get shooting pains up bottom, shooting pains down my leg and right to my ankles. Sometimes its so bad that my feet tingle and go numb too. Walking around I am slow, my teeth are gritted and I feel very heavy in my abdomen.
When it peaks I sometimes have to crouch over something. (Its usually at this point I feel like ripping my insides out!) I also get pink discharge at this time.
Then I have low level pain for a few days before becoming an evil bitch from pmt!
Its just hell, I hate my uterus and my ovaries!!!
The gynae said there was no sign of endometriosis...but there was no specific conversation about pouch of douglas etc...
Im not a weed about pain...I laboured and gave birth twice with no pain relief!
Could it be anything else?!
Im not letting it get the better of me though, I still work full time, and just to mention...I think one of the things that confuses the gynaes is that I dont get heavy excruciating periods. If anything, my period is weirdly light since this pain started...then every now and then I'll get a really bad one.
I'd have the Zoladex - side effects not that bad TBH and certainly better than the pain
Hello again your pain sounds horrendous.
You are quite right it's not normal to be in such pain and I think you need to keep persisting and I know I'm repeating here but do seek a second opinion.
The consultant gynae who did my last two laps is a specialist in endometriosis and keyhole surgery.
It obviously depends where you live but I can pm you his details if you like. You need some proper answers and in the meantime some decent pain relief until you see someone. I'm currently seeing my GP and trying different sorts of drugs to relieve pain. It's a long winded process but there are options.
have you had zoladex OpehliasWeeping Willow...can you tell me about it?
Thanks orangeflutie, that would be helpful if you could pm me those details. What pain relief do you use? thanks x
My husband, has had regula endoscopys every two years. He reached 70 , and have not heard about any enoscopy for four yearys. He recently had a blood test, as he is on ulcer tablets high blood presure tablets, and colestrol and heart tablets, and they found his body is not making much iron. He has now got to have and colonoscopy and gastrophy on the tenth of june. We are worried, that they are going to find some sort of cancer,or what could it be and what are they looking for they also said he may need a small operation. The doctor said to the hospital that he should have an endoscopy every year. When my husband found out that he has got to have these oscopys, the person on the other end, said no need to worry, as it is just procedure. But i think that they are also baffled as to why he is not making much iron. My husband is fit as he takes the dog out and does the leaflet round and also takes the children to school.???
Patient choice now means you can be referred anywhere for specialist treatment - if it's not too far from you I would recommend the endo team at the John Radcliffe in oxford - they are the national referral centre for endo. They are excellent and leaders in their field internationally.
You deserve a second opinion. Nothing to see is not a good enough reason. There will be a cause, someone just needs to find it.
You could be describing my endo symptoms btw. You have my sympathy, it's miserable.
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