Severe pelvic pain.. Any ideas?

[Charlotte1213]

I have been having pelvic pain and heavy periods for 10 years+ which I always associated with ovulating, I have had combined pill, deposited, implant, then I was given Pop which I must say really helped but after just over three years of being on the Pop the bleeding and pain returned, I was advised to run 2 packs 2gether which I did faithfully for around 6 months with no difference. My GP had taken me of it and the pain and bleeding got unbearable. I was referred to a gynanae who done biopsy and smear test, both of which are completely normal. Scans are clear apart from Pcos which I already knew.

I was advised to try the Coil which I have in atm, the bleeding has completely stopped but the pain is worse than ever, the only way I can function is to be doped up on very strong painkillers. I got an early appointment with gynae the other day but he is of no help at all. Apparently there is no pattern to my pain according to the consultant. Even though it is well documented through my GP that their is. I should probably add that I can not bear internal exams and from I started having these the pain is excruciating every single day with no break. When I go to loo it's sore when I pee but have been check for urine infections etc and all clear, I cannot bear to sit down if I haven't had my pain killers and I feel like I'm sitting on something on my right hand side of my pelvis but apparently now he said that it isn't gynae related. However he went on and put me into menopause, which I don't understand as this is usually a treatment for endometriosis, which apparently there is no way I have it even though he will not check me for it. He said something about switching my ovaries off, what is this to check for? As he said pain can't be related to my Pcos as the scans are all clear.

I have a review in 4months, I just think he's a bit hasty to put me into menopause considering this is only 3rd time he has seen me. Will putting me into menopause prove the pain is gynae related if it stops the pain?

Sorry for such a long post but I do not know what to do next.

Anyone know what the pain could be caused by?

[Alaine1 Administrator]

Hi Charlotte,

Sorry to hear about your pain. The drugs the doctor has suggested to put you in a pseudo menopause won’t prove it is a gynae issue. It might be that you have IC as you mention about painful urination. In some women this can become worse in the lead up and/or during a period which they then believe is a gynae issue. The same is often seen for IBS. For me I wouldn’t advise you going on them as unless there are exceptional circumstances you won’t be allowed them longer than 6 months especially if the pain is non gynaecological. IC can make internal examinations in some women extremely painful. I would suggest two things

1) ask to be referred or pay privately to see a women’s health physiotherapist as pain makes the muscles in the back and pelvis tighten up which can then be a generator of pain.

2) ask to be referred to a urologist or uro gynaecologist to see if there is any pain relating to the bladder. I myself have IC so I can understand how much pain this condition causes.

I know some women with PCOS do report pain but maybe try and use lifestyle changes -

Heat and/or cold - I prefer heat when my IC,adenomyosis or endometriosis flare up

Diet - I’ve seen a dietitian privately who explained some food is inflammatory. I made sure she had experience of gynae problems. Might be an option for you?

Stretching? Yoga or Pilates

Massage?

The list is endless!

A good book to read is Amy Stein Heal Pelvic Pain. Some libraries have this but I bought my own copy.

Also keep a detailed Pain diary recording pain levels, medication if any taken and the result, what helped, what made it worse. Details on period etc. I hope this helps. If I have any other thoughts I will post below

[Charlotte1213 in reply to Alaine1]

But my GP and I know it's is gynae related due to contraception helping to a certain degree.

I do have IBS but this pain is nothing like IBS pain that I usually have.

I find walking etc does help when I can manage it.

I have already had the zoladex injection- is that pointless or is it possible cause the gynae isn't sure, as surely if the menopause settles the pain that would prove its related to my cycle or would I be wrong in thinking that?

I will go and have another chat with my GP to see what my options are.

What is UC?

[Alaine1 Administrator in reply to Charlotte1213]

That’s the whole point even contraception helping doesn’t make it a gynae issue. There are non gynae issues that respond to hormone based medication. IC is non gynae but many women with the condition find contraception helps them. It’s a common misconception that both patients and GPs make. It’s something that frustrates many gynaecologists my endometriosis specialist especially. She believes and I’ve seen it at meetings with other gynaecologists where they have said that to help pelvic pain all of the conditions need to be identified. Many patients with have a gynae condition eg endometriosis (you have PCOS) but they refuse to accept that other organs within the pelvis is generating pain. Most gynaecologists especially those specialising in pelvic pain and endometriosis are very clear that it is very rare for there to be one single cause for a women’s pelvic pain even if pain becomes worse throughout the month. The bladder and gut are all influenced by hormones

The zoladex will only prove that there is something that is influenced by your cycle - bladder, bowel etc. It won’t prove it’s a gynae issue. Zoladex has helped both my adenomyosis and endometriosis related pain but I’m only on it long term due to 3 week long and very very heavy periods along with unrelenting severe pain. I’ve had everything multiple times but unfortunately nothing has worked. For me it’s been a god send as it helped identify an additional pain generator- my bladder which unfortunately doesn’t seem to get better with no hormones

Pelvic pain management is as much self management and lifestyle changes alongside medications. None of these can be neglected. It’s often the hardest part. For example I do the following

Medications for pelvic pain and gynae conditions - various types

Yoga & Pilates ti help my back pain from degenerative disc disease and possible arthritis. Also helps keep core strong

Diet - for mine I’ve done best on a vegan diet along with a gluten and dairy free diet - I’ve been gluten and dairy free for over a decade as the two don’t agree with me and cause gastric problems

Rest - pacing myself as pain is tiring

Getting good quality sleep

Mindfulness meditation- plenty of research shows this helps pain

Heat - water bottles

Managing stress as pain of any type is stressful

IC is interstitial cystitis which is now usually called painful bladder syndrome. It’s produces symptoms similar to a UTI but isn’t related to bacteria in a be urine some people will have all of the symptoms whilst others pain in the bladder is the main symptoms with some increased urinary frequency.

[RachaelE]

Hi Charlotte. I was put into chemical menopause to see if switching everything off had any effect on my pain after all investigations were inconclusive. It was to see whether or not a hysterectomy might be worth going for. I was already 52 and perimenopausal so it was an option for me, but it might not be for a younger woman hoping to have a baby. Being in chemical menopause did help the pain a lot so I went ahead with the surgery. Trouble is, surgery comes with complications so it’s never as straightforward as it might seem.

Hope you get some relief soon x

[Ellie2011]

Hi sweetie.

I think you need to see a different g p as it shouldn't hurt when you pass water. Does sound like water infection to me.

[kellerfly]

Get another opinion from another doctor! I agree, it does sound like interstitial cystitis (IC) and/or pelvic floor myalgia (a form of fibromyalgia). I have both. It took awhile to be diagnosed properly. But I have a hard time urinating, I thought I had UTIs... nope. I have a hard time sitting, and many other symptoms I’ve had to accept. I’ve had to adjust my diet, find the proper treatments, medications and adjust my daily lifestyle.

I hope some of this helps! Good luck.

Kelli