What else can I try?: I've just returned... - Endometriosis UK

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What else can I try?

endometether profile image
7 Replies

I've just returned from my fifth trip to a GP to try and find out what's wrong with me and have, again, been turned away with a prescription for pain killers but with no clear answers as to what could be causing my symptoms. Instead I've been given another diagnosis of 'painful periods' where it seems I'm supposed to accept that this is just the way it has to be. I'm beginning to get pretty desperate - I feel like there must be some cause for what happens to me. You can tell me if you think this is just wishful thinking.

The symptoms I have are that one in every three or four periods is accompanied with excruciating pain - pain worse than anything else I've ever experienced which causes me to shout out and roll around. The pain comes on very suddenly and is very often accompanied with vomiting, fainting and, sometimes, diarrhoea. It is so bad and can begin so suddenly that I have often found myself stranded away from home - the last time, while working away from home, I was standing alone at a bus stop when suddenly I found myself in so much pain I passed out and remained lying on the pavement for nearly an hour trying to wait for a slight lull in the pain to allow me to walk back to my apartment (just one street away). I was finally persuaded by my mum, who I had phoned to try and talk me through the pain, to phone for a paramedic. I was helped home and, since by that point the pain finally began to subside, given no further treatment.

Though sometimes I manage to predict the pain in time to stay home, stories similar to that above have happened a lot - a couple of times ambulances have been phoned by strangers unsure how else to help (once while I was abroad in Germany) - and each time I find it next to impossible to try and explain what is wrong with me, firstly because I don't really know myself and secondly because I am constantly floating in and out of consciousness because of the severity of the pain.

Other than this severe pain, which lasts on average about 3 - 4 hours, these painful periods are normal - not particularly heavy and of normal duration. The rest of my periods are accompanied by what I would describe as 'easy' cramps - completely manageable, treatable with pain killers and allowing me to go to work / live normally.

I have also often had problems with painful sex though I find it very difficult to work out if this is psychological or physical (this seemed to begin with my first attempt at taking the pill and I'm worried that it's perhaps memories of past experiences that are causing me to worry and tense up rather than any physical problem).

This is the fourth GP I have asked for help. One of them diagnosed IBS, though this doesn't seem to me to fit. I tried the contraceptive pill as treatment but each and every time doing so (with a variety of different hormones / brands) I find it distorts my mood, makes my relationship with my long-term boyfriend next to impossible and makes my sex-life even worse (painful with complete loss of sex drive). I really can't decide whither the everyday miseries of the pill are worth preventing the extreme but sporadic pain I suffer.

This time, like all those before, I just feel like giving in and trying to forget about it. Sometimes it is easy to forget the severity of the pain and I'm always optimistic by month three or four that it's not going to reappear. But it always comes back eventually and I never seem to be able to control it effectively using pain killers.

Does anyone else have the same symptoms? Is there anything else can I try? Should I push for a referral to a specialist?

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endometether
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7 Replies
Impatient profile image
Impatient

Go straight back to the GP and sit there until he/she refers you to the hospital for a vital ultra sound scan to check for fibroids, cysts of any sort, or anything which can cause sudden severe pain in the middle of a period. It is a process of eliminating the most easily checked for gynae conditions 1st. Once they are freshly ruled out, then you can insist on being referred to a gynacologist with a view to investigating further

ie MRI scan to check for adeonmyosis, or a laparoscopy to check for endo., polyps deformities of the vagina, cervix and uterus and so on. A thorough US scan scan actually tell a great deal - even if doesn't diagnose what's wrong - it can rule out many things.

Appointments with the gynae can take some time to come through - and the next step for you to take is to stop you periods and hope that in doing so you stop these super painful mid period pains too.

Taking back to back BC Pill for a few months may give you the relief you need by having fewer such episodes- even if endo or adeno is diagnosed - or fibroids even, stopping having periods is really the best solution to avoiding making the situation any worse than it is. And would be the goal whether diagnosed or not - as these pains for you are particularly worse

during your period.

I am sorry but you must put your own health first - even if that mean no sex with BF - there are other ways to be intimate without actually doing the penetrative sex act and hurting yourself even more. It won;t kill him to wait - and if he isn't remotely prepared to put your health and wellbeing as his top priority - he sure aint worth hanging on to.

And even if that means taking BC pills over a period of time. IF your BF can't see the sense in you taking the BC pills for medicinal purposes - quite honestly kick him in to touch and look after your own best interests - if he can't cope with the moods then he sure won't cope with any surgeries and GnRH drugs and so on that you may be facing for years, if you do have endo.

You might also find pain relief from trying out the endo diet which cuts out certain foods that promote oestrogen - which is what endo feeds on. Cutting out those foods and reducing the hormone levels by diet alterations is known to give many women period pain and endo pain relief. Not total absence of pain - but more copable with pain. But it can be quite a dramatic alteration in eating habits for some ladies.

Best of Luck and don't just accept another prescription. Take someone with you for moral support if you need it, but make sure YOU get the referal you are needing. That means being tough as old boots and telling your Doc what you want - and that you won't accept being fobbed off any more. Do your home work on the reproductive system so you know what you are talking about to the medics and so you better understand what they are saying to you.

The paralytic sudden pain episodes are the kind you get when a cyst bursts. it may be that they are filling up with blood (being endometrioma cysts) and bursting and emptying out a bit which takes a few hours to recover from - then nex period they refill up and get to burting point again. If the severe pain episodes are always on the same side - that points to a cyst, if in the middle - tends to point to the uterus being the issue.

At any event just taking pain killers is not a diagnosis and is not a solution. So you must get this checked out. Best of Luck.

endometether profile image
endometether in reply to Impatient

Thanks so much for your response. I need to try and get up the courage to return to the GP. I always let them talk me down but you're right, I need to try and stand up for myself and push for an answer.

With the pill, it's not that my boyfriend has been in any way pushing me towards any decisions or treatments - I just personally have found each experience of being on the pill pretty awful. It's difficult to weigh up the day to day negatives I experience via side effects with the longer term goal which is easier to forget about and push from my mind.

With the diets you recommend - where is the best place to find out more?

Billiebear19 profile image
Billiebear19 in reply to endometether

Hi sorry to but in ive suffered with painfull periods to the point were I was screaming in agony being sick ect painfull sex since I was 15 I went to my gp and after a year of going to the gp continuasly they they passed it off as period pain basically dwal with it its lofe they got so bad I ended up in a and e four times the last time I went she reffered ne for scans which nothing came up so doctors put the mirina in and that was horrible always in pain with it so got it removed thatvwas 3 years ago sonce then ive suffed in silence getting uti s on a monthy basis and in pain all the time I changed gpnin september and she refered me straigt way after hearing my history in october I had my gyne app and getting a lap done next week for endo all hormone treatment had no effect on me sorry to blabbet on but maybe its worth switching gp if you can also try with a female hope thins helps x

Billiebear19 profile image
Billiebear19

Also be persisant it will pay off eventually x

jojoiner84 profile image
jojoiner84

Keep trying, get a different gp if you can ( i found our female gp more willing to listen) and if need be print off some endo symptons and say you want to be checked for it, my sister had to do the same with her doc until he listened, just dont give in its your body and we know ourselves better than they do x good luck xx

Pands profile image
Pands

You poor woman - this makes me SO CROSS for you. You need to be referred, this is shocking treatment by the GPs (but sadly one many of us are accustomed to).

I agree with all Impatient says and the excruciating pain sounds like cyst rupturing to me from my own experiences. Please please go back to your GP and insist on an ultrasound scan and a referral to a gynae. This type of 'painful periods' is not right - in fact my gynae says that the very words 'painful periods' should ring alarm bells, you are not supposed to be in agony. Best wishes.

Lisawright profile image
Lisawright

i have had same poblem from the age of 17, am 38 and they have just found out wht is wrong with me maybe if i pushed it a long time ago i would have been able to have another child but i listened to wht they said dont let this lie u tell them ,hope this gets sorted out soon i have gd gp am so glad i changed mines or i would be living on painkillers with no answer xxx

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