Feeling lost and confused

[Elsa150]

I'm not sure what I'm hoping to gain from this post other than to maybe speak to people who understand what this is like.

So far I manage pain with a tens machine and painkillers but things are getting worse. I have pain most days, it's worse after sex and I'm now spotting after sex.

A few months back I saw a private gynecology surgeon because the wait list in Scotland was over a year and I was moving to Portugal. He seemed great and I was very happy with the appointment. He advised me to get the mirena coil and if that didn't ease symptoms to get the laparoscopic surgery.

I'm absolutely terrified of getting the coil though. I've struggled with my mental health my whole life, and after years of therapy I'm finally in a good place. I still struggle mentally but I can manage it most days. I'm so scared that having the coil will affect me mentally (all other hormonal birth control has been very bad for me mentally). So I just can't bring myself to get it.

I don't know what to do. I don't even know if I should be going back to him to discuss the bleeding after sex, or is it just normal? And how do I decide when to get the surgery?

I'm not sure what to do and it's all very overwhelming. In the back of my mind I worry that it's not actually endometriosis and it's something like cancer. I said this to the surgeon and he was confident it wasn't cancer but obviously couldn't say for sure.

I should mention that I've just moved to Portugal and I don't currently have a doctor here, I'm researching doctors so I hope to have one soon.

Apologies for the long rambling post and thank you if you made it this far.

[Tangoandmax]

Hi Elsa150,

I completely understand your concerns re. Contraceptives. I’ve reacted badly to all progesterone only options both physically and mentally. I was also offered the coil but my specialist agreed that previous symptoms would more than likely mean the same result and for me I wasn’t willing to risk it when it wasn’t something I could stop myself instantly. I’m on my fourth pill, (combined) working through to try and find one that suits, I took Microgynon for years when younger and never had any issues, my pain/problems all started when I stopped, so I’m willing to try anything to stop growth of endo (even if we’re not totally sure if it’s working).

Bleeding post sex isn’t normal. It was the key to my symptoms being taken more seriously even though it turned out to be an issue with my cervix. You should get this checked, it could be polyp or cervical ectropion (internal cells growing on the cervix). But any bleeding between periods/post intercourse should be investigated if it’s new for you. I think we all at one point or another worry it’s something more sinister, the uncertainty of it all/constant waiting lists leave you permanently stressing what if it’s worst case scenario. You’re not alone in any of this 🤍

Re. Surgery, it really does depend on your personal circumstances and how much symptoms are impacting your day to day life. It took me so long to be listened to, I felt it was the only choice. Could you get another appointment with the specialist, I suspect if you share you aren’t comfortable trying the coil, surgery would be next step x

[PastaGirl13]

Hi! I really hear where you're coming from with this one. The coil sounds terrifying to me and it's something I've worried about for a while too. I definitely think it would be reassuring to talk to your consultant about your concerns so you can get all the facts before you make any decisions. I'm not sure how doctors may differ in Portugal but for my local GP in England they automatically provide a free consultation to discuss the coil before having it so that might be available to you as well? Either way I can definitely offer some understanding on this one.

Currently, I take the progesterone-only pill and that does the job. I've been on the combined pill as well and both of them have been positive for me. Every experience is different for everyone but as someone who has struggled with my mental health and periods/endometriosis for a very long time, the pill has helped settle both symptoms and made the pain a bit more bearable. Sending lots of support and love x

[OlgaSz]

Hi Elsa,First of all, rest assured that whatever you feel, is absolutely valid and you can feel this way. I know that it can sometimes be difficult to feel heard especially when it comes to contraceptives and mental health. I wa son pills for 6 months and my mental health was at it's lowest ever. I had many sides effects, some of them didn't stop even a year after stopping taking them (yet I wasn't believed on this one...). I eventually flatly refused to take any more pills which was the only reason I was actually referred for a surgery that found stage 4 endometriosis. I was offered the coil and refused it as well. Knowing what it was like to be the pill I didn't want to risk it to be stuck (literally!) with a coil that I couldn't just remove when I wanted to. I've heard many stories here about people who didn't want the coil anymore due to their side effects, but couldn't convince their doctors to have it removed.

The surgery was the best thing that happened for me. My periods are so much more manageable at the moment. I don't bleed as heavily anymore, which is a godsend for me. I also know for sure what is happening to me - while maybe silly it validated everything that I was feeling. It allowed me to slow down during flare ups, as I previously thought that I may be just lazy. I know that I can struggle during my period, that there is a reason behind it. It made it mentally easier for me.

I decided to stop taking medications and go for all the lifestyle changes. Please bare ini d that they don't want for everyone though, and I am not advising you, but only saying what worked for me. I can write some more about it, if you are interested.