Chronic Pelvic Pain - Experiences and Advice

[ChloeV98]

Hi everyone!

First time poster here.

I was hoping some of you may be open to sharing your experiences, and any advice you have on the next step.

My story:

I'm 21, have been a registered nurse for 3 years, and I'm currently doing a graduate certificate that includes women's health. The reason for this is that I feel it is an area poorly understood and an area where communication and management could be much improved.

In 2015 I started experiencing lower abdominal/pelvic pain, pain during intercourse, and heavy and irregular cycles. After 3 months of hoping it 'would just go away, i visited my GP. Initially she told me there were cysts on my ultrasound, before later telling me I was fine and to go home.

Fast forward to mid 2016 and I was undergoing laparoscopy due to ongoing symptoms, negative swabs and normal pap smears and ultrasounds. At the time I had an Inplanon, bit the Gynecologist recommended getting the Mirena. Ultimately we decided against this. I was told the laparoscopy/hysteroscopy was fairly normal, however she still thought endometriosis was a likely cause.

Over time I've tried various alternative therapies (diets, exercise regimes, even Reiki), as well as medication much as the pill (gave me migraines) tranxemic acid, ponstan, etc etc.

Fast forward again to 2019 - Implanon removed as my partner and I wanted to both be medication free for 12 months before trying for a baby. Symptoms worsened.

Last month I had significant pain (any position to sit or stand hurt and I was crying in pain and had to leave work). My GP sent me for an urgent scan which showed a 4.8cm hemorrhagic cyst on my right ovary. One week later a repeat scan showed it was resolving. Back in (?)May an ultrasound showed one of my ovaries wasn't freely moving, and the sonographer questioned endometrial adhesions.

Because of all of this, I was referred to a new gynecologist (I moved interstate 10 months ago).

I visited him today and was told g he following:

- It's psychological. All in your head. If you just relax, your pelvic muscles will relax and sex won't be painful.

- It doesn't sound like you're a patient with endometriosis, or anything else.

- I did a pelvic exam and felt your uterus, it wasn't painful.

- If you don't want to get the Mirena, then you really don't need to come and see me again.

*Note: Maybe it wasn't painful for him, but it sure was for me*.

After all of this I walked out feeling deflated and very unhappy with the care I was given.

I have requested another referral, however the next closest specialist is 3.5 hours away and there is a large wait time.

Being the patient, is so much different to being the nurse. I have this feeling of... confusion? being let down? something.

I guess it just reinforced that patients need to be listened to and that they trust us, as health workers, to support them.

It is hard to look forward to all the things coming up (e.g. our wedding which was pushed back due to Corona Virus), when each day is painful.

Any information, advice, suggestions or just sharing your own stories, would be much appreciated.

Chloe x

[Cinnamonan]

Hello

I’m so sorry you’ve had that experience with this gynae, and being told it’s psychological.

I can relate to that for sure, and it left me in a very confused, dark place. So I hope you’re ok.

It took me a few different consultants before I found one that listened and was curious enough to say she felt a diagnostic laparoscopy might be an option. I weighed this up and thought it was my chance to find out if anything was a concern.

It turned out I had significant adhesions around my pelvic area and my bowels. Although not fab news, it was a massive relief to know it wasn’t in my head and that pushing to get seen by someone different was worth it.

My biggest learning was that I would do my research on the consultant in the future if I ever needed any other medical care - if you have this option I think it’s worth a chat with them before proceeding with them.

I hope you do find someone who can help you. X

[JoJo012 in reply to Cinnamonan]

Hi Cinnamonan, hope you don’t mind me asking but where about’s did you feel your pain exactly and what did it feel like before you had your laparoscopy and diagnosis? Just wondering if it’s possibly similar to mine?

I was offered a laparoscopy at the beginning when I first had my pain symptoms but turned it down as didn’t want to go through something so drastic for no real reason. I don’t have any pain in my abdomen area at all, it’s just in my pelvic floor muscles only.

Thanks,

Jo

[Cinnamonan in reply to JoJo012]

I completely understand that, the surgery itself likely causes adhesions so I don’t think I would do it again unless it gets severe.

Pain was usually sharp with bowel movements, around my periods and during intercourse. I also had a number of gut symptoms which my Dr put down to IBS, which I do have but this was really quite different.

I still get pain, mostly tightness and occasional sharp pains, but now knowing the cause I’m learning more about managing it.

It may be worth getting a second opinion before considering anything such as surgery?

X

[JoJo012 in reply to Cinnamonan]

Thanks for replying. Where was your pain felt? In your abdomen or pelvic floor muscles? X

[Cinnamonan in reply to JoJo012]

Both, but I do also have IBS so I think that could have contributed. Although the pelvic pain and abdominal pain are quite different.

My mum collapsed 5 times before they did an ultrasound and found an ovarian cyst the size of a golf ball- she was told it was kidney infections for years and she kept saying it wasn’t that.

You will know your body better than anyone, if you’ve had a change in your cycle or pain then it warrants someone listening and exploring this with you. X

[JoJo012 in reply to Cinnamonan]

Thanks Cinnamonan. I just wanted an idea of what adhesion pain might feel like. I’m guessing mine isn’t caused by this as have never had any actual pain in my abdomen. The only pain I get is from tension in my pelvic floor muscles which feel very tight, mainly left sided.

I’m guessing it’s not Endometriosis then because of this, so that’s why I decided to turn down the exploratory laparoscopy they offered me.

Just trying to rule certain things out x

[Bubble_by]

Your gynaecologist sounds like a turd.

I've been fobbed off countless times with the same excuses too. I too have pelvic floor dysfunction caused by endo but have only really got answers this year after a laparoscopy in March. I'm also taking the pill now which has worked out well for me.

You did the right thing going to a specialist... I know wait times are long but there might be a cancellation or change that could result in you being seen faster. My consultant is also a way away and it is annoying not being in close reach but if it results in better care then it is worth it.

Hope your studies go well 💕

[MelonMelon]

Oh my. That doctor needs to learn a thing or two. You poor thing!! I was fobbed off for years, you trust your instincts! It will be such a pain if you have to travel so far for decent care, but it could make all the difference, is there any way you can combine the trip with something nice to cheer you up? I'm so sorry you have met one of these terrible doctors, I feel so angry about the lack of knowledge and care around women's health!

It definitely sounds to me like endo

[ChloeV98]

Thank you all for your advice and support!

I have now been referred to another specialist and am waiting for my case to be triaged.

I have been told to start on the pill in the meantime. I've taken one before which left me with migraines and low mood, however I have been told this is a different one and shouldn't have these side effects.

Any experiences or advice on taking Levlen?