Endo diagnosis without laparoscopy

[rb1992]

Hi everyone,

This is my first post, just looking for some advice/experiences.

I was recently diagnosed with PCOS, after some reading I realised this wasn’t causing the pain I have been getting for years so went back to my GP. She referred me to gynaecology straight away agreeing there was a strong possibility of endo.

I attended the gynaecology appt in December. He briefly asked my symptoms, when I was planning on having kids (not until late 2019) and what I do for pain management. I had an ultrasound which again confirmed the PCOS. He then said he was “confident enough” to diagnose endometriosis. He said to try pregnancy and to continue with pain management through my GP.

Is this typical for a diagnosis? I left in a bit of a daze and didn’t really ask any questions. We aren’t planning on trying to have a baby until the end of this year and contraceptives never really agree with me so I am reluctant to take them but from what I’ve read hormone treatment is really the only way to mask symptoms.

Should I be pushing for a lap or should I just be happy to have been diagnosed without it? I’m also a bit concerned that if I do have endometriosis I don’t know where it’s growing and if it will impact my chances of conceiving at the end of the year.

I’ll be going for a follow up with my GP but just wondered if anyone had any similar experiences?

Thanks x

[rb1992]

That’s great, thanks for your help

[Missy100]

There are a few reasons a gynaecologist might not offer a lap, but all of them should be for medical reasons and not just be a fob off. Have they even explored the possibility of other factors causing your pain before settling on endo? I fall into a category where my gynaecologist feels a lap poses more health risks than good but she discussed this with me in detail as to why she thought this and I was happy with her reasoning. She did, however, send me for other testing, including (but not limited to) a hysteroscopy with biopsy to rule out any other causes before settling treating as endo, even though she she was confident from my symptoms that endo is my issue. (BTW I do also have PCOS which I was diagnosed with long before looking into endo being an additional issue).

Can I suggest that you request a follow up appointment?

-If under a certain consultant you may even see someone different within their team.

-If you go in again, go prepared with a physical list of the questions you want to ask - it is easy to forget when your head is spinning with lots of new information.

-Also ask if the care plan is due to how soon you are looking to conceive, as some treatment plans can affect fertility with the effects lasting longer than anticipated. Others put you into a false menopause.

-Is there anyone you can take into the appointment with you as support? They will also be able to be a second pair of ears for new information you might forget or not absorb because there is so much of it.

-Do not feel pressured into accepting a treatment plan you do not understand or agree with

If you feel you are not being heard, after another appointment, you can always ask your GP to refer you elsewhere for a second opinion and they should support this. A list of endo specialists can be found on line so you can check if there are any in your area.

Good luck!

[rb1992 in reply to Missy100]

Thank you so much for your comment that really helps.

At my appt he didn’t really speak about treatment options/reasons for not sending me for a lap. He didn’t actually mention laparoscopy at all, I only knew about it as my GP explained this is how endo is usually diagnosed. I also wasn’t sent for any other tests.

I had some extreme pain as a teenager which resulted in multiple hospital stays while they continually checked my appendix (which were fine every time). I started the pill soon after being in hospital and the pain pretty much went away. I started having issues with the combined pill around 5 years later so tried the coil which was awful for me, I then tried the mini pill which really affected my mood. Whilst going between all of thes I was having more and more issues of pain, weight gain, severe back pain etc.

I decided I needed a break from all the hormones and this is when all the symptoms really flared up and I went to my GP. I’m assuming this history has went to the consultants conclusion of endo. I did feel he was more trying to reassure me that it was possible to fall pregnant with these conditions and I shouldn’t worry.

I will definitely go back to my GP and ask to be referred again.

Thanks again for your reply, it has put my mind at ease and made me feel more confident in going back to my GP x

[Missy100 in reply to rb1992]

I am so glad you feel more confident about going back. Did you know that you can also request for a copy of any letter that the specialist is sending to your gp to also be sent to you? Some do it automatically but just in case this didn't happen for you I thought it might be worth mentioning.

I never faired well with birth control pills but did spend some time on the depo needle during which I ceased to have my period which helped me a lot at the time, but there are also people who find it is not a good fit them. In addition, if you are looking to conceive in the near future it may be a reason why it wasn't brought up as an option.

It is wonderful to hear that they were reassuring about pregnancy being anticipated without issue, despite your PCOS. Something exciting and positive to look forward to!

[rb1992 in reply to Missy100]

I didn’t know about the letter, I will definitely ask about this.

I definitely consider myself lucky that both the GP and Consultsnt tried to put my mind at ease and reassure me that having a baby is possible. My GP has been great so far so fingers crossed for when I go back.

Thank you again for all the information, hopefully I’ll get some clearer answers now I know what I need to be asking and looking for.

Thanks!