Help and advice needed on period problems please?!

[Lyd_Prou]

I've been suffering with extremely long, heavy, painful periods for roughly 9 months now and was first seen by my GP around Christmas then got referred to the Gynaecologist. My periods can last up to 3 weeks, however norethisterone was prescribed and they stopped the bleed. The pain continued, and painkillers don't make a difference. As soon as I stopped taking norethisterone the bleeding continued as it did before. I'm 18, but had a large ovarian cyst when I was 14 which ruptured leaving me extremely ill. Has anyone suffered with this, could it be endometriosis or maybe more cysts, or will I simply have to deal with it for the coming years? Thank you! (forgot to mention I have had 3 inconclusive ultrasound scans)

[sw1996]

I can't get over how similar this is to me! I'm 18 aswell and I'm fed up with it all now. It may be endometriosis, I've had 4laps in the past year. 2 I had cysts relived no Endo seen and the other 2 no cysts by Endo removed..it is very rare to find Endo on an ultrasound scan. Just keep fighting .. Like I said I've had 4 laps and they still don't really know what's causing all off my problems.

Wish you the best x

[Lyd_Prou in reply to sw1996]

Thank you for your help! I was clueless where to go to find advice and then I found here! I've felt as if i'm just going crazy and its 'just a period' as my mum insists! Thanks for the help! X

[Scooteeder]

Hi,

You poor woman - what an awful situation to be in! I can sort of empathise.

I'm a lot older than you, but I do share some of the same symptoms. I have been diagnosed with Endo (in 2011), and have had 4 lap surgeries so far. MY symptoms started as a teenager - I always had pretty heavy and painful periods, which sometimes felt so bad I needed to go to bed. They were sometimes accompanied by migraines. I do remember being put on the contraceptive pill for a while in my teens to see if that would "regulate" my periods; but other than that, nothing really got done. The pill didn't really help all that much; I just found it caused bloating and spots! Mind you, that was in the 1980s!

I had a few years of pretty trouble-free periods in my 20s. Then, in 2002 (I was aged 31), the problems came back with a vengeance! Painful, heavy periods; bloating; water retention; nausea; dreadful pelvic and lower back pain; fatigue; upset stomach... I spent a number of years going backwards and forwards to my G.P. who didn't seem to know what it was. I didn't get referred to a Gynae until 2006!

In my case, the Gynae was useless - I guess I just got a really BAD one! He got loads of things mixed up and incorrect. HE thought I had polycystic ovaries (cysts had shown up on an ultrasound), but I never remember him doing any further tests. He was always absent from work, so I rarely saw him at appointments, which meant that I didn't get any proper treatment. Fortunately, I was lucky enough to see a junior Doctor in 2008, who referred me for a hysteroscopy with D&C. He felt that I had NONE of the usual symptoms of PCOS! Around the same time, I also had a colonoscopy (because I was still having bowel problems). The colonoscopy came back clear - showing my problems were on the OUTSIDE of my bowel (the surgeon wrote that he thought it was Endo). After the hysteroscopy I was told I did NOT have PCOS! I was then put on the Mirena device, to try to stop my periods - again this DID NOT work for me. I still had heavy and painful periods.

My G.P. was NO help. I was at a big practice with several doctors - and you never saw the same one! The WORST one there was called Dr. Pusey, and the sad thing was that she was female, and didn't seem to understand menstrual problems at all! She thought I had irritable bowel, then stress, then anxiety (which my useless Gynae also thought was the reason I was struggling to have children!), then a tummy upset... on and on with the WRONG diagnosis! She didn't even bother reading the letters from my other Hospital doctors that suggested I had Endo - NOR did my Gynae!

I demanded a second opinion in 2010. I saw a new Gynae who pretty much immediately said he thought it was Endo! I had my first lap in 2011, but the Hospital that did it failed to remove all my Endo. I then demanded referral to an Endo Specialist, and I've had 3 more laps.

My point is that Endo can be present, but get missed. Not all doctors are able to recognize it. Also you can have lots of Endo, and very little pain; or very little Endo, and lots of pain. It's not about the amount - it's about where it grows, and what sort of Endo it is. Endo can cause various symptoms, that some doctors confuse for other illnesses. For more on symptoms you could read

endo-resolved.com/symptoms....

It may be a good idea for you to keep a diary of ALL your symptoms - when they occur, where in your body they are, what sort of pain, etc. This can be useful to take to appointments with you. You really need to get to know your body - and what is usual for you. Try to see if there are patterns to your symptoms. Also, try to keep a record of any treatments you try - and whether they work, or have any effect (including side effects). This way, you get to know what works for you.

You really could benefit from seeing a specialist, as many basic Gynae doctors do not have the skill or experience to correctly diagnose and treat Endo. Did you know that on average, it takes 7 years for a woman to get a correct diagnosis of Endo? In my case, it took 9 years from me first spotting what seemed like Endo symptoms (or over 28 years - if you count from when I first had painful/heavy periods!). The problem occurs because lots of doctors are not familiar with Endo, so they mistake it for other illnesses, or think it's just "normal period pain"! Specialists should be trained in recognizing and treating Endo. To find a specialist in your area, look up this website

bsge.org.uk/ec-BSGE-accredi...

You may have to pester your GP for a referral! It might help to take a diary of your symptoms wit you, to show how important it is to have a referral, because your symptoms are not well-managed. Also, if you feel nervous, take somebody with you for back-up and "moral support".

Read up on Endo, as that way, it makes it easier for you to argue your case. Endo does not usually show up on Ultrasound scans - so you COULD have it. Remember that, and tell your doctor. Also, Endo can come in different varieties. Women can have SUPERFICIAL ENDO that just grown on the surface. This is often easier to treat, and may be lasered away. However, some women can have DEEP INFILTRATING ENDO (which is what I have). This grows deep inside muscles and ligaments, and therefore can not easily be spotted, or lasered away. It usually requires more complex surgery and a more experienced surgeon to remove it. Deep Endo can be VERY painful, as it often grows in awkward areas, and causes nodules. For more on deep and superficial Endo, read

safe-endo.com.au/Whatisendo...

I'm REALLY SORRY that this is such a long reply, but I wanted to try to help as much as I could. I do hope that you are able to sort out some treatment that works for you. Endo, if you have it, is not something that can be permanently cured, but you can at least find ways of living with it. It's NOT all bad - as many of the women on this Forum can prove. plenty of women live successful lives with Endo - they have jobs, go studying, or have children. It' all about staying tough, knowing your rights - and fighting hard. Having Endo is not easy - it can be painful and tiring - and it's an illness you didn't ask for... but remember that if you are struggling this Forum is always here! You can talk to women with Endo on this Forum any time you like. We will all try to listen, and to help. DON'T GIVE UP!

Best wishes,

Elaine. x

[Lyd_Prou in reply to Scooteeder]

Don't apologise for the long response! The more information I can get the better! Thank you so much for the reply and the help, and like you said just don't give up. I know that it isn't 'just a period' like my mum has been insisting but i'll keep fighting. Thanks again x

[AnnaEvelyn]

Oh my god, that is nearly identical to my situation when I was 17, I bled for 32 days and was put on northisterone (you poor thing, I remember gaining a stone in a week and being so emotional over everything, it was horrible!)

But the sounds of it, it could be either cysts or endometriosis, go to your gp and ask for an ultrasound, if nothing shows up then chase it for endo, they'll be reluctant to diagnose and treat it because it really is only diagnosable through a laparoscopy, but it does sound like endometriosis. Best of luck to you!

[Lyd_Prou in reply to AnnaEvelyn]

Thank you for the response I felt as if I was going crazy from being told it's 'just a period'! Thanks again x

[Hidden]

Ouch! I know the severe pain when you have cyst burst. You feel like you are dying.=( I'm a little bit older than you but I was diagnosed last January after an emergency appointment at the women's clinic where I live. It was diagnosed with endo and a cyst through an ultra sound before they wheeled me off for a Laprascopy that confirmed endo, a burst cyst, and a few other issues.=(

Prior to my diagnosis, I was having heavy irregular periods, some lasted for much longer and were so painful that I would have to sometimes crawl to the bathroom under bed rest. It didn't help that I had a lack of support from my family and the doctors. The doctors kept fobbing me off and my mother, especially, kept insisting that it was normal. You know your own body. If something doesn't feel right to you, get the support that you need in order to fix it.

It's a relief to have a diagnosis after so many years of trying to get someone to listen. It is a shame that it had to happen in such a way. You shouldn't have to deal with this. My experience (along with many other ladies on here, I'm sure) can tell you that you can't leave it to continue. If you are in pain, then you must see a doctor. And if that doctor is reluctant to do anything about it, keeping looking until you do. I feel that my endo wouldn't have been as severe if I had gotten the help that I have received sooner. I am currently, feeling a recurrence of symptoms and after having an ultra sound, I know that it is endo. What is going to happen, I don't know, but I'm feeling so low and downtrodden by it.

Endo can be missed in scans. In fact, as many ladies here have already stated, it is very rare to find endo on the utlra sound, unless it is at a very severe stage. Sometimes you won't even have cysts but may have endo. Its a complex illness.

Best wishes,

Kat

[Lyd_Prou in reply to Hidden]

Thank you for your reply it's been really helpful, I appreciate it. It's nice to know that i'm not the only one and are there are people who have had similar experiences and who understand, and don't say 'its just a period' like my mum has been saying. Thanks once again x

[Hidden in reply to Lyd_Prou]

It really doesn't help when you are told by someone who should believe you say things like "its just a period" when you know that it isn't so. If you need to talk, feel free to PM me. Again, best wishes to you. I really hope you find the support that you need and deserve.=)

[Lyd_Prou in reply to Hidden]

Thank you so much

[Chelsey5966]

I am so sorry you are suffering so much! You are so young too. I hope you get some answers soon.

[Hidden]

I'm sorry you appear to be going through a tough time, i would push for a referral to gynae and see if they can help, like others have said you really need a laparoscopy to diagnose Endo i believe as it won't show up on ultrasound. We are here to support you to xxx