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 was on 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 back on 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 in mind that they don't work 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.

[Elsa150 in reply to OlgaSz]

Thank you for the reply, I appreciate it. I would love to hear more about what lifestyle changes helped you. I find when I exercise regularly that the symptoms are lessoned. But I'm not what other changes I can make.

[OlgaSz]

I started eating whole foods plant based diet. I was vegan previous to my diagnosis, but after some research I changed my diet completely - I eliminated all processed sugar and fat, including oil, alcohol, caffeine, soda drinks and so on. There is a fantastic book about the subject "How not to die" by Dr Greger that I can't recommend high enough. He explains the importance of the diet and how it affects our day to day life in a really accessible language and backed by MANY research. I also eliminated gluten, as it was worsening my symptoms. I started doing 30 minutes of yoga everyday. And I mean 30 minutes every single day. It did hurt when I started, especially when my fatigue was kicking in, but it reduced my PMS to a fraction of what it was previously. I don't get back and hip pain anymore!

The next thing was to remove or reduce all endocrine disruptors from my house. Many things had to go - everything with added fragrance, so scented candles, air fresheners, fabric softeners, perfume; anything foamy with SLS, so convencional beauty products, shampoo, shower gel, even toothpaste were next on my list. Later I also looked into the cleaning cupboard, from where I replaced: washing powder, fabric softener, dish washing liquid, anything with bleach etc. it took months to find all the replacements!

The next step was adding things - I found a research that green tea with ginger significantly reduces menstrual pain from day 1 and it keeps giving better results the more it is used. The recommended dose it 3 cups of green tea with a 1/4 of a teaspoon of ginger, 3 times a day. You don't have to drink it everyday, but you can start on day 1 of your pms. I swear by this! After 5 months of drinking the stuff regularly my pain levels are lower than ever. Seaweed is also well known for helping with painful menstruation, so I introduced sushi Fridays. We all love in the household and it makes me feel better.

After all of that I realised that my endometriosis is going to stay with me forever. I can do all the adjustments in the world, but sometimes it can take a toll on my mental health - I finally allowed myself to feel worse on some days and just let go. I use my TENS on some days and take it easier. I openly talk about my diagnosis with friends, family and in the workplace. While I don't want to be identified through endo lense, it is a part of my life now. I found that speaking openly about what I am going through makes it easier to bare. It turns out that there are many more people than I expect who also suffer from endometriosis, but they didn't know anyone with the diagnosis so assumed there is noone around them either. Around 1 in every 10 women suffer from endometriosis. If you know more than 10 women chances are there is someone else suffering alone. 🤍

I know it sounds like a lot, but I swear by the above. I know we are all different and there is no cure for endo, but I really believe that the sum of all the tiny changes ads up and makes all the difference. I have never been better in my life - my pain levels are low, I don't deal with side effects of any medication, as I don't take them, and I found a good support network both over here and by being open about my diagnosis and struggles. It still sucks to have endometriosis, but life now is way better than it's been in years.

I hope this helps, but please let me know if you have some more questions. I am more than happy to share everything I tried 🤍

[Reid_Zoey]

Hi. While I can't pass advice on surgery and diagnoses, as I'm currently going through diagnosis myself and haven't yet had any surgery, I just wanted to offer experience with the Mirena coil.

I've struggled with pain and bleeding from the very beginning and was put on combined pills from the age of 16. These affected my mood and mental health massively, while also not really affecting the pain or bleeding at all. Last year my doctor suggested the Mirena coil to help with the pain, and I was really cautious about it because of my struggles with mental health. They assured me that the Mirena coil had a significantly lesser effect on your hormones which makes it less likely to affect mental health and mood. Because the pain was so bad, I agreed to have it. Since having it, my pain is so so much better, I have no bleeding, and my mood has stayed exactly the same as it was before getting the coil. It's relieved the pain so much that I can now function day-to-day without being doubled over with pain during and between cycles. Getting the coil was such a massive relief for myself.

The coil obviously will affect people really differently as we are all different. It won't help everybody and could negatively affect a lot of people. But I just wanted to offer a bit of experience from myself about the positives I got from getting the coil. So if you're ever in a position where the coil is one of your only options to help with the pain short term, I just wanted to provide a bit of reassurance that the coil could hopefully show positive effects for yourself as well Sending you support and wishing you all the best with diagnosis and treatment <3

[Elsa150 in reply to Reid_Zoey]

Thank you so much for sharing your experience, I really appreciate it. I feel like I need to try the coil so now I'm just looking for someone to fit it (I'm now living in Portugal).