Endometriosis ruled out: where next??

[heatherevans28]

Hi lovelies.

Had my laparoscopy yesterday after 6 doctors had guessed endometriosis over 4/5 years, and nothing was found.

I'm getting serious pelvic pain every month (no period as I'm on the coil) and lesser pain every ovulation. This has happened when on the pill and then on the coil and before when on nothing. It's like clock work but leaves me doubled up in agony and feeling faint with the intensity of it. I also get severe pain from intercourse. Nothing has shown up on ultrasound or now on the lap.

The surgeon said that's them done and because there's no endometriosis they don't have an answer. Then simply suggested I get stronger pain relief from GP. I'm feeling lost as we were so sure it was endo.

I wondered if anyone had similar symptoms and could possibly suggest where to seek help next?

Thank you xx

[Alaine1 Administrator]

Hi Heatherevans28

I'm wondering if you have been investigated for bladder pain syndrome/IC? Bladder pain can be there all the time or in others only with ovulation. It can also be made worse with intercourse as the bladder, uterus are all very close to one another in the pelvis. It's one of the reasons many women wake up from a lap and are then told no endometriosis which leaves them 'disappointed' as they have been steered towards this disagnosis by there GP/ consultant. A good gynaecologist might have given you a follow up appt to explain other sources of pelvic pain which can include bladder pain syndrome/IC which can co exist with endometriosis or be present on its on. If it turns out to be this condition there are lots that can be done and long term many go into complete remission from it or it improves. To get diagnosed you could see a urologist or a urogynaecologist as they specialise in females with bladder symptoms. Also a visit to a women's health physiotherapist might be a good idea as they often see women with bladder pain and can be equally helpful at assessing if your pelvic floor muscles are overly tight. I hope this helps and let us know how you get on

[heatherevans28 in reply to Alaine1]

Thank you for this. My GP is still convinced it's gynaecological so I've got a second opinion. I wonder if bladder issues always cause problems with urination though? As i have none which seems slightly unusual. Any info is helpful though, and I will look further into it.

Thank you xx

[MimiJones]

Hi - sorry to hear what you're going through.

Was your lap done by a general gynaecologist or an endometriosis specialist? It can be very easily missed.

xxx

[heatherevans28 in reply to MimiJones]

Hi.

Thank you. It's pretty hard going, but I've got lupus so this still feels rather minor to me (although not to my GP and family).

It was done by a general gynae surgeon so I'm pushing for a second opinion to see if I can get a specialist referral from them.

Thank you xx

[Hidden]

Hi, I'm scheduled for lap surgery in two weeks after getting diagnosed with endometriosis in July. I've noticed pain on my right side, too, but won't know until after the surgery.

I read something once from a holistic health doctor years ago that inside your body, there's no room. All of our organs are pushed up against one another, with no space. So, when one organ is affected like an ovary, it can affect the organ it's sitting next to, and vice versa. After doing some research into endometriosis, I discovered a lot of it can be soothed with a good diet. It makes sense, since the uterus, ovaries, and cervix are right next to the intestines.

So, a couple of weeks ago I decided to go gluten-free, dairy-free in my diet. I've already noticed a HUGE difference in the amount of pain I felt in my previous period. I also had a much lighter flow with less clotting. I've also dropped a few pounds as well, and my abdomen has flattened slightly and felt better. I've also given up tight pants, jeans, and just wear yoga pants and flowy dresses. What a difference, too. This is all in two weeks, I swear.

I know it's extreme, but just give gluten-free, dairy-free a try. You are in pain, and it might not be from gyno stuff. It could be bowel or intestinal related.

Now, if I could just have pain-free sex the rest of my life, that would be ideal, right?

Hope this helps.

[heatherevans28 in reply to Hidden]

Hi,

I'm not sure about the proximity theory but I know there is often high inflammation during periods which affects multiple organs and there has been extensive research into why pain is so hard to pinpoint.

I was considering using the endometriosis diet to help but it's hard to know what to do when you don't have a definite cause. I had a working diagnosis of endometriosis before my op, but it now seems I do not have it. I'm going for a second opinion though so it might all change. That specific diet assists with the causes of endo, but is different from what you are describing.

I'm glad it's helping your periods but it does not seem to be affecting your cause. Would that be right? Also is it just a non gluten and dairy diet you are on? Or are you following a specific regime?

Thanks for the info.

Heather xx