Bad ovarian pain

[MelissaM26]

I’ve had bad ovarian/vaginal pain for years really.
I started my period when I was 9, suffering with heavy painful periods ever since. My biological mother has endometriosis and traces of cancer cells, lately my pain has just been getting so so bad, within the last year I’ve been to my GP countless times. A&E 4 times for it and been referred to gyne several times but keep getting sent home. I’ve been told that my right ovary is polycystic yet they tell me it’s nothing to worry about, I’ve been told I’m getting sent to pain management but why am I having all this pain
Has anyone had similar experiences?

Have you ever discussed this face to face with a gynaecologist?. What has happened to these referrals to date?. What reasons have they given you for just being sent home?.

May I ask how old you are now?. Endometriosis is a common cause of severe period pain and it was the first thing I thought of when I read your post. Its also not detected through blood tests or internal ultrasound scans, its usually discovered via a keyhole surgery op called a laparoscopy. You need to speak with a gynaecologist, not a pain management clinic. The cause of all this needs to be properly determined, not merely just treat the symptoms. Do not be fobbed off further now as you have been to date, you will have to be bloody minded and determined to get answers. Many women take years to be diagnosed with endometriosis because they've been fobbed off and or otherwise ignored like you have.

www.endometriosis-uk.org/ is a good website to also look at here.

An ovary that is polycystic has multiple cystic follicles on it and can also appear larger than a normal sized ovary. A normal size ovary is about the size of a walnut.

These cystic follicles can disappear, only to be replaced by further cystic follicles. Some of these follicles release hormones (which can interfere with ovulation), some are dormant whilst one may contain an egg. Polycystic ovaries are actually quite common and can cause periods to become more irregular.

My ovarian pain turned out to be caused by a 7cm endometrioma on one of them - the ovary had swollen up hugely. It was nothing to worry about in the sense it wasn't cancerous, but it was part of a wider endometriosis problem. Endo is notoriously under- or belatedly diagnosed. I would ask to be referred for further investigations.

I’ve spoken to a gynaecologist face to face twice now, they send me for ultrasounds and after it’s the last I hear from them really, I’m 18 going on 19 in a month, all I ever get told is that I’m young and have lots of eggs but I don’t understand how they can say that to my face while I’ve been in tears of pain and the fact that pcos is to do with interfering with the release of eggs not how many you have, I’ve been put on all sorts of medication and pain relief but nothing really takes the edge off. I try to fight and fight with them to get somewhere but it just feels pointless

@AttilaTheMeerkat
They gave me absolutely no reason for sending me home other than they couldn’t figure it out, one of them sent me to A&E where I then got told I had IBS and yes I’m not a qualified doctor but that is a completely different area of pain so how on earth they got that conclusion is madness really if I’m honest, I know I’m young and I have been trying to conceive but I know it’s not normal to get the pain I am having weather how old/young I am. I started getting intense pain at the age of 15 and I don’t just mean period cramps. It’s just pain all throughout the whole month

Endometriosis can be often misdiagnosed as IBS. Do not accept this at all.

I would insist to your GP that you are referred to another hospital in your nearest city rather than the hospital you’ve been to previously. Do also consider contacting endometriosis uk.

Is your mother of any help here re advocating also for you?.

@AttilaTheMeerkat
Unfortunately my mother and I fell out quite a few years ago I’ve not seen or spoken to her for a couple of years now, I am due to have a face to face gyne appointment at the end of October but the doctor had already had a telephone appointment with me and told me that because sim young and healthy and have lots off eggs if she doesn’t find anything that’s severe on my ultrasound she will refer to pain management, I was honestly just in tears afterwards I tried to explain my situation and she just would not listen to me what so ever, it’s awful the way you have to be so pushy with doctors nowadays just to try and get some sort of help against no help at all

You will need to be persistent with them in order to get answers. Sending you for ultrasound scans is clearly not sufficient when it comes to endometriosis. You are not too young to have either PCOS or endometriosis and its indeed possible you have both.

You need proper investigation from a gynae, not a pain management clinic. If this was in a NHS hospital I would contact PALS there re your treatment to date. Endometriosis is not detected on internal ultrasound scans (I have endo and none of the many internal ultrasound scans I had detected the endo present) and I would tell PALS also you are not happy with the standard of treatment you have received to date.

MelissaM26

My DD is also almost 19 and has severe uterine pain - on codeine as I type, to manage the current episode of pain.

She's had an ultrasound which was declared "normal" and has her first gynae phone appt in a few week's time. Not sure what to expect. DD fears and suspects it's endometriosis, she says her online research of symptoms and other women's description of their pain match her symptoms exactly.

Apart from pain management, what treatment is available to young women? She's already on the pill to try and control her periods & pain (but still does get days of cramps despite not bleeding whilst on the pill). She cannot tolerate an implant and doesn't want or think she's suitable for the coil.

I see how debilitating it is for my daughter, you have my sympathies OP.

@AttilaTheMeerkat
Thank you that’s very helpful I didn’t even know PALS existed, I will be sure to get in contact with them tomorrow morning, could I ask you some questions, please feel free to ignore or answer none of them if you aren’t happy too at all but just incase you possibly might be, I would just like to ask how old you were when you found out you had endo, what age ish you started suffering with it and how long it took the hospital to help you find out, if you don’t want to answer any of these I completely understand but if you are willing too thank you so much I very much appreciate it

@PineappleCakes
I have also been given codine for pain relief I find 80% of the time it has zero affect for my uterine and ovarian pain and when it does. That it does little so I try to avoid taking it as I don’t want my body to “get used to it” as it can become addictive if taken much too often, I was scared when I had my first gyne appointment, I was also suspected endo but honestly everyone’s experiences are different, the best thing I could say is just try and be there for your daughter. It’s at times like this I wish I had my mother here and I wish she could be there for me when I’m at my worst with the pain, good luck for her appointment I hope everything goes as well as it possibly could as unfortunately the experience of pain is just awful

You poor thing. That sounds dreadful. I'm afraid you may have to push to get the treatments you are entitled to, but you are entitled to them and to help for a pain-free life.

Here's the official steps doctors should take - you should be getting fuller investigations. Tell them you are formally requesting this, in line with NHS policy. pathways.nice.org.uk/pathways/endometriosis

I was 31 when I was diagnosed with endometriosis and I now realise I had problems with this since onset of menses at 14. It took several months for the hospital consultant to suggest laparoscopic surgery and this surgery found and removed the endo in my uterine cavity.

Pineapple cakes

Your daughter needs a laparoscopy and a good surgeon to remove any and all endometriosis deposits. They should suggest this.

She should not attend this initial gynae appointment on her own only because such can cause considerable nerves. She does not want to leave there thinking, “oh I should have asked about xyz”. If she does not already do so, I would also encourage her to keep a daily pain and symptom diary as this would also give the gynae clues (a suggestion also for you Melissa). Note everything including pain levels on a scale from 1-10.

I would not want any woman frankly to go through what I did in terms of severe period pain. She like Melissa will need to be determined in order to get answers.

As I have already mentioned ultrasound scans do not detect endometriosis if it is there. I have had more of these types of scans than I care to mention and none of those detected endometriosis.

Endometriosis Society has a pain and symptom diary - link to download from this page

www.endometriosis-uk.org/visiting-your-doctor

I expect that, as well as helping you track and articulate your symptoms, it would serve as a signal to doctors that you are clued up and not to be fobbed off. NHS recommends it too.

Thank you everyone for everything
I appreciate all this help and advice it certainly isn’t an easy journey for myself so I really praise the women out there who are suffering even worse than I am, my prays and heart goes out to all women who are suffering it isn’t easy so thank you for all the help

Thank you AttilaTheMeerkat and unnumber. I'm having a look at the NICE guidelines now.

When you get referred to a gynae it needs to be one who has a specialist interest in endo and they perform a laparoscopy. General gynae's are not trained in this area and will dismiss you. Only a lap will show the true extent of endo. I had one in April and it was found in 3 places and removed at the same time. I was only taken seriously as we were ttc as well so I was finally referred correctly. Best of luck, there's a fb group you join which has loads of useful files to read up on before surgery etc and roads to getting diagnosed etc. It's called 'endometriosis guidance and information resource uk' search that and ask to join.

How have you been @MelissaM26?

My DD ended up in A&E recently because her pain was so bad. She was very worried, all she got was a bit of sympathy (male doctor: "I'm glad I'm not a woman, you poor thing") and a prescription for stronger codeine. We appreciate there's not much they can actually do, but she was in so much pain (she's grown up stoical, living with this for years now) and it was hard to be a bystander.

However she had her first (phone) gynae appointment recently and they've put her on the list for a laparoscopy. Please continue to push for your own investigative treatment, don't be fobbed off with ineffectual pain management

Hi @PineappleCakes

It’s really nice to hear from you, I had my ultrasound a few weeks ago. He told my that my right ovary was enlarged and that I had a few cysts etc.. the usual which is what I suspected, however I did I have 2 blood tests for fertility and my progesterone levels have come back low not so low that it’s a definite that the egg hasn’t developed which would be 16 or lower my level was 20 but a level of 30 of higher is when an egg is released so I am just currently waiting for my phone appointment which is still nearly 5 weeks away with my gyne