Back to square one

[annatonina]

Hi all!

I've just walked out of possibly the worst medical appointment of my life. Finally got to see an endo specialist instead of just a general gynaecologist and she opened by saying "You know you don't have endometriosis, what are you expecting from this appointment?" I was told after my laparoscopy last year that an endometrioma was removed so the surgeon thought endometriosis was the most likely diagnosis so this completely blindsided me. The consultant kept talking over me and basically told me that my symptoms were "just hormones", maybe I shouldn't work so much (I work a normal full-time week) and should "take baths to relax" so I didn't feel so nauseous and exhausted coming up to my periods. I have an appointment booked to get a mirena coil fitted and she seemed to think this would solve all my problems, even though I have had one in the past and it didn't help my symptoms at all. She then said she wasn't recommending any further treatment or investigation and would discharge me back to my GP. I asked what I should do next then since I'm still experiencing symptoms and she just shrugged.

I've been crying ever since I got home about it - 10 years of doctors telling me there was nothing wrong with me and my symptoms were all in my head and I finally had a diagnosis, a reason why I struggle so much, now I feel like I'm back to square one.

Anyone have any words of comfort and/or advice?

[Busy-Lizzie]

Hi,

I can understand why you must be feeling frustrated and upset, after getting the referral and pinning your hopes on the specialist being able to help you find a way forward to help you.

Were there pictures taken during the operation when the endometrioma was found and removed? Have you had a further scan to check for any more?

I would suggest waiting for the specialist to write to your GP, then go back to the GP to discuss it.

It seems strange that you are only being offered another Mirena, when you made it clear the Mirena didn't help previously. The specialist should be listening to that and taking it seriously.

Some women who have endometriomas are put on continuous oral contraceptives to prevent ovulation, and it helps them.

Do you have an idea of what you would like to happen now?

[annatonina in reply to Busy-Lizzie]

She showed me the pictures taken during the lap and to be fair to her apart from the cyst they do all look fine. I had an ultrasound a few months ago which came back clear, but I had one before my laparoscopy that also came back clear and failed to show the 5cm cyst stuck to my ovary.

I don't really feel like she listened to me much at all - she kept asking "do you have any questions" but then talking over me or starting to talk again before I could ask any questions. There was an endometriosis nurse in the room as well but she didn't really say anything. I got a feeling of "not endo, not my problem" from both of them.

The Mirena didn't help but I don't think it made things worse and it's really convenient birth control so I asked to have one put back in - I asked for it out before my lap because I wanted everything gone at that point, I was in so much pain, but looking back I don't think the coil contributed. I can't do the combined pill because of migraines or the minipill because of mood issues so I'm going to give the coil another chance before I move on to the next form of birth control.

Now I've had a chance to calm down I think I'm going to wait until I've had the Mirena for a couple of months and then go back to the GP. I've had a lot more bowel issues the last few months so it might be worth going back down the gastroenterology avenue for a while.

[jasne77]

I wonder how it is possible that you had an endometrioma without having endometriosis? If they did a biopsy after your lap, and tested the tissue of the cyst in a laboratory they should know for sure if you have endometriosis. Didn't they do that?

Can you get a copy of your results from the laparoscopy in the UK?

[annatonina in reply to jasne77]

The letter I got after cytology on the biopsy said that there were cells consistent with endometriosis so that was "the most likely diagnosis". It implied that they couldn't tell for certain but I certainly wasn't expecting to be told so bluntly that I didn't have endometriosis at this appointment.

[jasne77 in reply to annatonina]

Now I see. But you still have symptoms which affect your life badly so they should be looked after and they should figure out was causes them. Your specialist sounds indeed insensitive. Women are often fobbed off and told it is all in their head when they know there is something wrong with their body.

I've also heard from women with severe endo on the bowel that it was missed during the first laparoscopy and then they had to struggle even harder to get a second laparoscopy. Can you get a second opinion?

[Thecrazypugglelady]

Oh my goodness I feel for you. Is there another doctors you can change to and if you can swap take a diary in with things that make it worse etc I always find that I am taken more seriously when I take a pen and paper in . I really hope you get answers as frustrating as it is please dont give up you only need than one person to make the right call.

[Hannah_w1990]

I'd go back to the GP and ask to be referred again but with a different Gynaecologist, before you get anything fitted. The GP's are usually understanding, I would just explain that you are no closer to resolving your issue and you don't understand the diagnosis, as it was unclear. Then if you do get a referral, explain what you do know, ask them to clarify what the issue is and ask what the alternative treatments are as you felt the coil was unhelpful in the past.

I have Endometriosis as well as PCOS and I wanted surgery but my Gyno explained that she felt, based on my description of the pain, I'd benefit more from seeing a Pain Management specialist who can treat with physio, injections and other non surgical treatments. She also recommended a Progestrogen only pill to make my periods lighter and less painful, but I think I will be stopping as it has given me quite bad mental health side effects.

I understand the struggles of feeling fobbed off by the doctors. Its taken me 17 years to get both conditions diagnosed and feeling closer to finding a treatment that works for me, although it's not perfect yet.

Endometriosis and these kinds of conditions are still not well researched, and so they can only really follow standard practice, but I think from what I've read on many of these forums, is that the pill or other hormonal treatments are not particularly effective in most cases.

Good Luck going forward.