Awful periods - should I get a second opinion?

[BingumyThob]

I've always had bad periods but recently they seem to be getting worse. I went to the GP about it and she was really rude and dismissive to me and now I'm terrified to mention it to anyone else as I fear I would be wasting their time. Just wondered if anyone can relate to having periods like this? What would you do if you were in my situation?

Sorry if this gets a bit long, but so as not to drip feed, here is my history:

As a teenager my periods were relatively long (7-10 days on average), sort of irregular (cycle usually between 25-35 days) and quite painful. I had one random period that lasted about 3 months, was referred for an ultrasound but nothing came up. I then went on the progesterone-only pill and periods stopped altogether.

Jump forward about 5 years and I came off the pill to TTC and got pregnant almost straight away. Pregnancy was ectopic and ended up having an emergency salpingectomy due to a ruptured Fallopian tube.
After the surgery periods were similar to before, with a few extra sharp pains on the side where my tube was removed, and also some pain between periods.

I then got pregnant again about 5 months post-op. DD is now 17 months old.

After DD was born I bled for about 10 weeks, had 2 weeks break and then got my first period (felt very shortchanged by this as was exclusively breastfeeding and expected a break!). Periods have come like clockwork every 28 days ever since.

My periods now last for at least 10 days, often 14. The first 7 days are extremely painful and very heavy. I have started getting pains in my legs for the first few days, and a weird throbbing in my vulva which is excruciating - it feels a bit like there is a massive weight hanging from my labia. I have mentioned this to a few people and have yet to speak to anyone who has experienced this. I have also been getting some spotting and cramps between periods.

I went to the GP about it and she took some swabs, which came back normal. I then went again and had to beg her to refer me for an ultrasound. The sonographer literally scanned me for about 2-3 minutes transabdominally, told me everything was normal, and sent me on my way. I went back to the GP and she told me that there was no need to refer me to a specialist for further investigations, that my cycles must just be "normal for me", and that I'd better just "learn to live in pain" because they will probably always be like that until I hit menopause (I'm only 25 now!). She also said that I probably have adhesions left over from my ectopic pregnancy and that they may go away but will probably cause me pain for the rest of my life. She implied that I was wasting NHS time and resources and I left the surgery in tears.

I feel like I should get a second opinion. I'm sure my periods are not normal, and I think there must be more investigations that could be done. I'm finding it really hard to cope. I spend half the month in agony and the other half dreading the next period. The blood loss makes me weak and exhausted. The thought of coping with this for the next 30-odd years until I go through the menopause is seriously getting me down. But I'm embarrassed and scared of being made to feel like a time-waster again. WWYD?

I'd get a second opinion.
'Get used to it' is not an acceptable answer when you are finding it difficult to function half of the month.
The ectopic adhesions may always twinge a bit (mine do) but that's nothing to do with excessive bleeding, and there are conditions that may cause that which cannot be diagnosed via ultrasound (e.g. adenomyodis).

Thanks so much for reading my long, waffley post, Polly!
Sorry to hear that you had an ectopic too. How long ago was yours, if you don't mind me asking? The twinges can be really painful, like being stabbed in the ovary

Do see another GP within the practice and make your voice heard. Consider changing practice if necessary too. Your symptoms are ongoing and are of many years standing. This is not normal by anyone's standards and you should not simply put up with it. You do not have to learn to live with pain; I would complain to the practice manager as well but if you do not want to do that then speak to NHS England.

I can relate to both the vulval pain and pain in legs (in my case this was all due to endometriosis as well). My vulval area felt constantly heavy, it was a dragging sensation and the sciatic nerve was also being affected by the endo too.

Do not be fobbed off and insist on answers. You should be referred to a gynaecologist as a matter of course. What no-one has mentioned to you here is endometriosis (many GPs are really not up to speed on this at all) and that is not picked up through swabs (having those done was probably unnecessary) or internal ultrasound scans because the deposits are so very small. Pain leading up to and or during menses should immediately be checked for endometriosis.

Adhesions once they are formed do not go away; they have to be surgically removed. Drug treatments do not touch these once they are formed. These are like sticky strands that tether organs together and these can cause pain too.

If you do not already do so, keep a pain and symptom diary daily as this can give the gynae clues as well.

You need a referral to a gynae. Don't take this bullshit from your GP.

You might have some relief from the Mirena coil but you need a full gynae investigation. See another GP or change your GP practice.

Definitely see a gyne. I have been put on meds for 1st 3 days of period which really help. Mine were heavy and got point afraid leave house in case of leaks. You don't have to just put up

Have you tried taking evening primrose oil?

Thank you all for taking the time to read my post and reply.
It's actually really reassuring to hear that it's not normal. I was starting to feel really down about the fact that I find it so hard to cope with every month when I've been told I should be able to just learn to live with it.

Attila, I'm sorry that you have experience of endometriosis. It sounds horrible. The vulva feeling heavy/dragging sounds exactly like what I've been trying to describe. It can be so painful sometimes that I can't stand up for more than 5-10 minutes at a time. I've tried to describe it to a few people and they all just look at me like I'm nuts, it's good to know I'm not the only one who has had this problem. How do they diagnose endometriosis if they can't pick it up on an ultrasound?

I will definitely try and get an appointment with a different doctor and push for a gynae referral.

Norky I haven't tried evening primrose oil, I've only ever heard of it being taken for acne. I just looked it up anyway and it's not recommended during breastfeeding or TTC and I am currently doing both so not an option.

Bing, I had 2 ectopics about 4 months apart 9 years ago. The first was treated with drugs and the second time I had surgery. About 4 months later I conceived DD2.

Re endometriosis, they should definitely check you for that. I believe the only way to diagnose it is a laparoscopy, where they put a tiny camera in your abdomen for a look.

I do get a bit cross when I hear about GPs telling women there's nothing wrong with them based on an ultrasound. There is clearly need for some of them to attend training on what a scan can and can't do. Sigh.

Endometriosis is as the previous poster wrote usually diagnosed through a keyhole surgery op called a laparoscopy. The endometriosis if it is sited can be removed via such surgery but it can recur.

I would urge you to not put up with this and seek proper answers from the people who do know so not this GP you've seen to date. I would return to this surgery and see another GP within the practice and or consider changing GP practice as well. Do push indeed for a gynae referral.

In the course of my fertility treatment I had more internal ultrasounds than I care to mention. None of those scans detected the endometriosis in my uterus because the endometrical deposits were so small. It was only the lap that showed the full extent of the endo and it was throughout my uterine cavity.

It's clearly nonsense that GPs don't know enough about endometriosis, which is a pretty common condition and very much within the realms of their experience.

Contrary to some of the other posts here, some symptoms can't be readily explained, don't have a cause, and/or have to be managed rather than eliminated.

That said, it's a shame that the GP came across dismissive and rude. A second opinion is never a bad thing to have and rarely a "waste of NHS resources". In any event, neither GP that you see will be just making it up as they go along. They are likely to be following this guideline. If endometriosis is a concern, maybe have a glance through this one as well before booking an appointment with a different GP.

GPs certainly should know about endometriosis, but I would gently suggest that they don't necessarily do so. I was variously told that I had IBS, constipation, piles....actually I had stage IV endo. My GP kept telling me to 'wait and see what happens' whenever I went to see her because the excruciating pain I was in.

Even the consultant I finally saw told me that he could see no sign of active endo. It took an endo specialist to look at the scans that had been taken during my laparoscopy by the first consultant to spot, immediately, that I had quite an advanced stage of the condition.

I don't think I'm alone. I'm afraid it's still routinely overlooked and/or misdiagnosed. Happily there is treatment and recovery is possible.

Please seek a second opinion, OP. I'm sorry you had such a brusque response from your GP.

"It's clearly nonsense that GPs don't know enough about endometriosis, which is a pretty common condition and very much within the realms of their experience".
I agree that GPs should know about endometriosis but not all of them by any means are up to speed at all on gynae issues generally. The only GP who has been of any real help to me with my gynae issues of PCOS and endometriosis was the one who simply referred me to a specialist for further evaluation.

I have seen other GPs who do not recognise it and do not think of endometriosis even when presented with its symptoms. I had one GP say to me that endometriosis was uncommon; my response to that was it is the second most common gynae problem seen in women after fibroids. Another GP wanted me to use the Mirena for my endo; that was refused because I know that the Mirena is not officially licenced as an endometriosis treatment.

@Halsall I still not sure that this is likely to be a pure knowledge problem. GPs will often try "wait and see" or "try X and let me know if things don't improve" because that's sufficient for the majority of people that they see. Those that have persistent or worsening symptoms (and so present multiple times) are referred on.

If every woman who saw her GP with severe menstrual pains (2-3 per GP per day?) had blood tests + ultrasound + laparoscopy, the system would be overwhelmed. Women with endometriosis would be at the back of a very long queue for investigations and there would be harm caused by the excess number of laparoscopies. This classic article from the BMJ Gatekeeper and the Wizard [[http://www.bmj.com/content/bmj/298/6667/172.full.pdf]] illustrates the problem well and is (I think!!) a fun read.

To be honest, a GP might suspect endometriosis but only think referral was helpful if the symptoms were debilitating enough to necessitate surgical intervention. Otherwise, a lot of the treatment options (ibuprofen, oral contraceptive pills, etc) are the same as for severe period pain.

@AttilaTheMeerkat I don't know who you saw or what symptoms you had but most second year medical students would think of endometriosis if presented with a case of abnormal pain +/- bleeding around the time of menstruation. As per my reply to Halsall, I think there are other factors at play.

Endometriosis is "uncommon", of course, and isn't the cause of severe menstrual pain for the vast majority of women who see their GP with this problem. I suspect that's what that one GP was trying to get across?

None of this is to say that endometriosis isn't under-diagnosed, which might well be true.

Can you afford to go private OP? Or at least you should definitely seek a second opinion. You should not have to live in pain. Would going onto some hormonal birth control be a short term solution for now until you can see a gynaecologist?

Thanks again for all the replies and support.
I think I will definitely go for a second opinion.

Penelope, I can afford to go private and am seriously considering it. The waiting list for an appointment at my GP surgery is a few weeks and then if they did agree to refer me it would no doubt be a few more weeks.
So realistically that is at least 2 more cycles of doom and misery, the thought of which makes me feel like repeatedly hitting my head against the wall. But then I am on day 5 of debilitating pain and heavy bleeding, so probably at the worst point of feeling sensitive and crappy.
I don't want to take birth control as DH and I are TTC number 2 (another reason why I would like to get this looked into sooner rather than later, in case it is affecting my fertility).

John, I think you are being a bit disrespectful to the two posters on this thread who have actually had experience of being repeatedly dismissed with symptoms that did turn out to be endometriosis.

I'm not saying I have endometriosis myself, I have no particular reason to think that other than that my symptoms are fairly consistent with the symptoms that present with endo.

Also, I'm not sure if you actually read my op properly?
You said "GPs will often try "wait and see" or "try X and let me know if things don't improve" because that's sufficient for the majority of people that they see. Those that have persistent or worsening symptoms (and so present multiple times) are referred on."
I DO have persistent and worsening symptoms, I HAVE been to the GP multiple times, and they haven't even given me any advice to manage the pain, bleeding etc, let alone a referral. All they have done is told me to "learn to live in pain" (Those were her exact words).

JohnHunter Are you male as your name suggests or are you a GP? Or neither? Because your tone comes over as arrogant. You certainly appear to have no sympathy for women with terrible periods.

I don't know where your stats of 2-3 women a day consulting a GP about their periods. Your imagination perhaps?

Unless you are a medical expert who has dealt with diagnosing endo I suggest you keep quiet.

Please get a second opinion OP - see different GP. I could have written your post symptom-wise - but thankfully not the ectopic.

My very first period was heavy, long and painful and so it continued unabated for 3 decades. I bled profusely with clots and the vulval pain you describe. The pain was indescribable and each period lasted 10 to 14 days. I would have a week feeling well and then the PMT would start and away I would go again. I have fainted with the pain before now.

I was given various medications to try and suppress my periods which were only partially effective; and I could not take the pill because of migraines.

Eventually I had a hysterectomy aged 42 and it is the best thing I ever did - my life was transformed. But I look back now from the ripe ild age of 68 and think what a bloody waste of my fittest years it was and what a blight it was on such a massive chunk of my life.

Like you, there was nothing to find on assorted investigations; and when my uterus was removed it showed only a small fibroid. No-one knows why my periods were so painful and disordered, but they messed up my life good and proper.

Go to a different doctor - preferably one that bears a passing resemblance to a think feeling human being. Do not allow your most fit and active years to be blighted by this just because some silly lazy doctor can't be bothered to help you. You have all my sympathy - it is a real misery.

@JohnHunter you can't know my medical history, of course. But I was repeatedly fobbed off by several GPs after presenting in my 40s with pain severe enough to cause visits to A & E, even worse than the 'normal' crippling period pain I'd endured since the age of 12. Which many other GPs had told me I had to 'learn to live with'.....much like the OP, in fact.

I had endometriosis and none of them appeared to have considered that possibility from my history, which I readily supplied to them.

A couple of years ago the Guardian newspaper asked for womens' experiences of trying to get their endometriosis diagnosed, and they were deluged with stories about being dismissed by the medical profession. It's worth reading.

Bingumy sorry for the derail but I feel very strongly about this! I hope you get some answers from a more proactive doctor.

My experience of endometriosis is not all that dissimilar from Halsall describes. My problems with severe pain and other distressing symptoms started with the onset of menses at 14. That warranted investigation that was not forthcoming.

I realise now that this was due to endometriosis in its "mild" form of the disease. I was not told before I was diagnosed why these symptoms were recurring or happening at all. I was basically left to get on with it because no-one knew why this was happening. Painkillers did not even touch the sides of it.

No-one medical thought of endometriosis and that was never mentioned, let alone considered as a possible cause for my symptoms. They simply failed to find the cause because I was not adequately investigated. To be subsequently told by a GP that endometriosis is "uncommon" when I know differently (in that it is the second most common gynae problem seen in women after fibroids) is simply adding insult to injury.

Bigumy - do seek a second opinion and let us know how you get on. Do not be fobbed off, you will need to be persistent in order to get answers.

This is serious affecting your quality of life. Definately go to see another GP.. Have you had your iron levels checked also as they may be low. Let us know what happens with the next GP.

I am sorry that my replies were interpreted as disrespectful - they certainly weren't intended that way. My second post wasn't with reference to the OP at all - I was simply trying to put across the difficulty that GPs have in sorting out undifferentiated patients. For what it's worth, I agreed with everyone else that the OP should seek advice from a different doctor. I certainly did not intend to undermine those that have found themselves in that position.

@BingumyThob I did see that your symptoms are severe and persistent. Sometimes "wait and see" can go on for too long. In the Endometriosis link I provided above, the first line of the guideline suggests referral for "all women with suspected endometriosis to a Gynaecologist to confirm the diagnosis by laparoscopy, and for consideration of medical or surgical treatment. In particular, offer referral for women with unconfirmed endometriosis if... The woman wishes for referral [or] She has severe or longstanding symptoms". As per that post, I would consider looking through that guideline and go armed with it to the next GP you see.

I don't however think that some of the comments here ("fobbed off", "insist on answers", "bullshit from your GP", etc) are as constructive as perhaps they were intended.

@PollyPerky I'm surprised being male turned out to be a problem here as the question ("should I get a second opinion?") doesn't obviously require personal experience of this problem. Cyclical abdominal/pelvic pain +/- irregular periods was a pretty frequent presentation when I did my time in general practice, albeit a decade ago. It should not be unfamiliar territory to an experienced GP.

I will step out of this thread as it wasn't my intention to takeover or to cause upset. @BingumyThob I hope the next person you see will be able to make some progress with this problem.

Thank you all again for your responses.

If I hadn't posted on here I think I would be continuing to follow that GP's advice and continuing (and failing) to try and learn to live with this.

I've decided to bite the bullet and try and get an appointment with a gynaecologist privately. I can't face getting fobbed off by another GP.

Now to pluck up the courage to make the phone call (I have severe anxiety issues too, and phoning people is one of the things I find especially difficult, but that's a while other thread...)

John, it sounds like the tone of your posts was unintentional and I certainly don't want to start an argument here.

I will just say, however, my op was clearly asking two questions (can anyone relate to my experiences, and what would you do in my situation?). I didn't start this thread wanting to have a debate about how the NHS works and how hard it is for GPs to cope with the huge strain on their resources. Next time you decide to post on a thread like this I would advise you to think about what the op is actually asking and not start ranting about something which is, essentially, irrelevant.

If it would help, Bing, you could email the consultants secretary and ask them to mail you back with details of their next available appointment.

Lots of luck. I hope you find some answers and get it sorted.