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Please please help! Terrible pain from the IUD that is unbearable and I'm not coping

(6 Posts)
RupertBear15 Sat 04-Feb-17 15:51:56

I am asking for advice and support from the lovely ladies of Mumsnet. I am in such terrible pain and have used up the resources now of the NHS and am struggling to cope at all.

I'll give an outline of what has happened to me and if anyone can relate to me or has any supportive advice or opinions, I would be so happy to hear from you.

I cannot believe how bad this past 6 weeks have been. I am 45 and have 3 children with my husband. I had a copper coil in for 8 years with no problems at all and have found it very successful for me. But on 14 Dec 2016 I had it replaced with an identical copper coil, not the Mirena as I suffered from acne when younger.

I have adenomyosis and polycystic ovaries more on my right side. I came home from the fitting and all was well. However, the ext day I started to spot bleed and then the following day was overwhelmed by a very intense burning sensation just like a UTI. I started to bleed heavily but thought it might be my period. I went back to my GP who tested my wee and thought i might have an infection, even though none was found. He prescribed me Trimithoprim ( antibiotic) and sent me home. 3 days later I was in agony. I have a urinary prolapse and I was up for 2 nights trying to cope with the intense burning sensation, excreting the urine but not able to empty my prolapse properly or if I did it felt as if there was more inside. So I returned to my doctor and they sent me to the sexual health clinic In Canterbury where I explained my symptoms and I was examined. The lady doctor thought the coil might have perforated my womb due to the bleeding, but was able to remove the coil so that was not the issue. No infection found in my wee. She diagnosed me with Pelvic Inflamatory Disease and prescribed different antibiotics to get me through Xmas and told me to book an ultrasound scan ASAP. The relief from the burning was totally amazing, once the coil was gone I could actually feel as if there was trapped urine from my prolapse running down my vagina and tube. I spent 48 hours gradually weeing out small amounts of urine and and was even leaking at one point so had to put a pad in. The really powerful burning left me but I was in so much pain all across my lower abdomen ; sore to the touch, tender all across my fallopian tubes and ovarian area. I could barely eat or sleep I was in such discomfort. I gradually got a little better but not a huge amount. I was walking around, doing some chores but not my usual self and my appetite was poor. The burning pain has sloughed off but not by 100 percent. I booked a scan on the 4th Jan for the 25th Jan as that was the earliest date they had. Later that week of the 6th Jan, the pain got worse. I then got severe pain across my ovaries, spanning my bladder and abdomen. My husband took me to out of hours surgery at the hospital and the locum said that he though i had burst cysts due to the inflamation. He also found blood in my wee, a trace. So I went back to my GP the next day and he checked me over, did another urine test which showed some trace blood again, so they sent that off to the lab. He also put me on a bladder infection antibiotic. The results came back and showed no trace of blood at all which I though very odd. The Nitrofluodantin ( ?) spelling!, did not help and my burning pain all through my urethra up into my bladder, uterus area continued. It would wake me up when I lay down and I can barely sit down as the pain goes up my nerves though my vagina/urethra up towards my abdomen and radiated out. Also my urination patterned changed form one where when I had the old coil in, I would hardly make it to the loo before my weak bladder gave way and I had accidents,plus prolapse wee after emptying first time, to being tight and almost having to push to release my bladder contents plus the prolapse. I had my scan on the 25th plus a blood test and candida swab. But the pain overwhelmed me again, I went back to the surgery and this time the doctor put me back on Metronidazole and Doxycycline. My scan came back all normal, no cancer and bloods clear. There was some fluid near the ovary and the doctor said I had to 'retrain' my bladder but gave no detail. No cysts either! Odd, considering I did have polycystic ovaries from a scan years ago. I told the doctor I was in so much pain via my vagina and urethral area that I could not sleep at all ( 3 hrs per night approx), plus real loss of appetite. I was shaking in pain in the room but all she did was examine me and that she would forward me to see a specialist. I came home from that and have managed to book to see a specialist myself privately this Monday in Margate as the the NHS wait will take weeks and I am in so much pain and distress I cannot cope with any more waiting and lack of sleep. I was in agony 2 days ago- pain all across my abdomen, not stabbing just the burning, sore and it makes me feel so so unwell. So I went back to out of hrs again at the hospital. Doc found blood in my wee.Examined me and said I was soft. He thought I have neuropathic pain or nerve damage and prescribed Gabapentin. He dismissed me saying my cysts had burst and that a cut in my womb would heal in a few days. That was Thursday and I am in so much pain today with the burning and now nervous exhaustion due to the pain , lack of sleep and poor appetite. I have been prescribed Zapain, Tramadol, Naproxen and Co -Codomol and now Gabapentin! I am taking Zapain which is ok but I get breakthough pain and shortness of breath. I have look up everything on the net and can't work out what the coil has done to me - a cut, tear, allergic reaction - Pelvic Inflammatory Disease what? !!! The NHS cannot help me now and the GP's have been so unhelpful, so dismissive and I can only have 10 minute emergency appointments so they just deal with each symptom as I present it and just say ok, more antibiotics, more painkillers. I am crying with the pain, barely coping with the housework and children. I have never had anything like this before, no diagnosis, I have even phoned 111 about 3 times to ask for support at 6am after a sleepless night of pain and gone through my symptoms again and again. My husband is beside himself with my anxiety and pain and it's hard for me to get his help as he works in London and commutes early every day and I know he needs his rest. I am having so little sleep, I am anxious to the point of panic attacks as I cannot handle the pain searing up through my vagina and across my abdomen. I am worn out after 5 weeks of pain! I want to get to the hospital on Monday and beg on my knees for some help. No infection has been found so far,, The 111 doctor told me that the swab should have been taken from my cervix via a speculum, not me using the cotton bud style application around my vagina. The Zapain is spacing me out and I am short of breath as a side effect. I am scared to take Gabapentin as I suffer from anxiety quite badly. Could this be neuropathic pain? Interstitial Cystitis? Urethral Syndome? Has anyone experience of this kind of reaction to coil? Have I been torn? I don't understand why I am burning when my scan says the bladder is normal and lining normal. It feels like the terrible UTI but it isn't. I do not understand what is going on after weeks in pain, I had none of these symptoms at all before the coil was put in. If anybody could help or support me, I would be so grateful- I feel so alone and Google has no answers either. I am trying to keep calm but it's not easy with so much pain, a family to run and I am not able to sleep as the pain wakes me up. Thank you for reading my very very long post. I am so worried about myself and I find the Zapain side effects awful but I have no choice as the pain is unbearable.

Mousybrown Sat 04-Feb-17 16:07:59

I would say if you are in that much pain that this could be a potential emergency? If the coil has damaged you internally that needs attention.
I would go to A and E under those circumstances. It's sounds like you need to been seen asap. Do you have a temp?

RupertBear15 Sat 04-Feb-17 16:19:15

Hi Mousey
no I have no temperature- never had have. I have been on antibiotics so no sepsis. I have been twice to outpatients in out of hours and they have sent me home. The just don;t know what if wrong with me and the doctor insisted that a cut or tear to my womb would have healed by now. I don;t even know if they would help me at A and E. When I was at the sexual health clinic in Dec, the Doctor wanted me to have an emergency scan but the department wouldn't orgaqnise it sad

RupertBear15 Sat 04-Feb-17 16:25:08

Thank you for reading and reply to me. My previous coil was fine and I've not had any problems with my bladder before and with my scan clear, all the A and E outpatients locum said was wait to see my specialist. I just don't know what the coil has done to me - it felt like the burning was pressure on my prolapse and that I was retaining urine. The locum doctor said possibly my womb had rejected the new coil as they old one was happy there and I have developed a neuropathic pain.

Mousybrown Sat 04-Feb-17 16:36:13

It sounds awful for you....have you got a tens machine? might be able to give you something me relief until your appointment on Monday?

RupertBear15 Sat 04-Feb-17 17:58:16

No I haven't, but thank you for the idea, I will see if I can get hold of one for relief smile

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