New here and searching for support and answers

[RedRabbit1]

Hi! I'm new to this forum and endometriosis in general and could use a bit of help.

I've read quite a bit about endometriosis over the last few months but feel like I'm getting conflicting advice.

Here's my journey so far: I've always had somewhat heavy and painful periods but they have been regular and I've been able to manage with painkillers. However, exactly 5 months ago, I got very severe abdominal/pelvic pain and cramps a few days before my period started (which is unusual for me, as I usually have pain around the 3rd and 4th day of my period). As the pain increased over a few days, I finally went to my GP on day 5 (by which time my period had started), who transferred me to A&E with suspected appendicitis. A&E examined me, sent me to an ultrasound (which showed nothing except some free-flowing fluid in my pelvic region) and concluded that it wasn't appendicitis but some normal infection that would go away on its own. They gave me some strong painkillers and sent me home. I travelled to Germany for a holiday the next day (I had checked with the doctors in A&E to see if I could travel and they said that I could) but by the time I got to Germany, the pain was so severe that, despite the strong painkillers, I was on the floor crying. So I went to a hospital in Germany, got admitted and ended up staying there for 5 days. They did multiple ultrasounds, also could not see my appendix but saw the fluid and also agreed that it likely was an infection. They put me on antibiotics and contemplated doing a laparoscopy but then didn't as the antibiotics seemed to help. They took several blood tests - for cancer markers (came out negatively, thank god) and to check for infection (which showed that I did have an infection - however a nurse in the UK later questioned the results when I showed her my file).

Around a week and a half later, I was back in the UK and could feel some of the pain coming back, so I went to out-of-hours GP, who found traces of an infection in my urine and gave me some more antibiotics. She also suggested that I tell my GP to consider endometriosis if the pain comes back again. The pain got better and I had about a week without any pain but then it returned - so I went to my GP and suggested looking into endometriosis. Since then, my GP has referred me to an ultrasound (which again found nothing unusual except a little bit of fluid in the pelvic area) and a gynaecologist, who said it sounded like it might be endometriosis but that it could also be an infection. The gynaecologist sent me for a laparoscopy, which I had yesterday. They found two small places with endometriosis and the doctor suggested I go on the pill or get a coil fitted.

I'm now at home recovering and feeling a bit lost. While I think my GP has been very helpful, I have found that the other doctors have had very little time and there seems to be no follow-up treatment or appointments after my laparoscopy.

I understand that my journey has been relatively short compared to others, who have had to wait years for a diagnosis, so I don't want to sound ungrateful. However, in my pre-admissions appointment before the laparoscopy, I had some medical questions that the nurse could not answer and some of the comments the doctors made before and after my laparoscopy yesterday are contrary to what I've read elsewhere. I, for example, had asked the nurse during my pre-admissions appointment if they would take photos during the laparoscopy (if they found something) and whether I could see those, and she said that they can't/don't take photos. However, I saw photos in my file when the doctor came to see me after the laparoscopy. The assistant doctor, who talked to me just before the laparoscopy, also asked whether I would consider having children over the next few years, as that helps to treat endometriosis, and whether I want to be fitted with a coil during the laparoscopy if they find endometriosis. I read elsewhere that the advice that childbirth cures/properly treats endometriosis is wrong, so I am unsure about the doctor's advice. I also felt like I should not be asked 1hr before a procedure if I wanted a specific treatment (the coil) without anyone properly discussing it with me and giving me a bit more time to think about it.

I apologise for the very long post and would greatly appreciate any advice or comments - esp. in terms of how to navigate endometriosis and the NHS to get more support.

Thank you so much for reading this post

[Hazel173]

Hey, okay so I got diagnosed last November but was given no follow up either. Ive pushed to be referred again but still not seen my original gynae (who I actually liked, listened to me which is hard to get the now). I thought I should of been given one so not sure why I didnt. For the pregnancy part it really depends. I felt fantastic while I was pregnant and had none of my usual symptoms (although I stopped being able to eat fruit without sickness and diarrhoea and still cant eat it 5 years later... weird I know) but my symptoms got drastically worse as soon as Id given birth. You can never tell what the future will bring. You need to choose what is right for you at this stage in your life and not let your doctor push you into a decision based on your endo. It takes over so much of our lives already.

[RedRabbit1 in reply to Hazel173]

Thank you so much for your advice and sharing your story with me. And I'm sorry for the time it took me to respond, I needed to take some time away and just process it all. But it really helps to hear from others and their experiences.

I'm starting to see more and more how active you have to be and push for things to happen, which isn't always easy especially when, as you said, endo already takes up so much of your life.

[Mrs1982]

Hey! Welcome to the endo club...it's not a fun one sadly

Unfortunately, many GPs and even consultants don't have all the answers with endo because it's so complex. It varies between individuals and follows no real pattern.

The fact that you've had a laparoscopy would, in the docs mind, mean that you've been treated. Im about to have my 3rd laparoscopy but after my first two there was little support/follow up afterwards. They rely upon you contacting them with updates. They should do a 1 or 3 month appointment with the consultant who would then discharge you unless there are complications with your recovery. But many don't get that!

Re: the coil. After my 2nd lap I had the coil fitted. I think this has helped with the control of the speed of endo growth as it has been slower between lap 2 & 3 than between 1 &2. They certainly should have spoken to you way earlier than just before the op about that!

I also was given a course of GnRH injections to starve the endo (that just came with menopause symptoms for 6mths) which has also helped, I think.

Sadly there is little support for endo sufferers, apart from forums like this where you can find out others' experiences. Endo presents differently and impacts individuals in different ways so its hard to get an exact replication in someone else to know what to do. Just keep in regular contact with your GP with endo updates and stay in contact with your consultant if you can too.

Hope this helps!

[RedRabbit1 in reply to Mrs1982]

Thanks for the reply and your advice! I really appreciate it. I didn't even realise I'm supposed to have a consultant that I can contact - I thought he was just a gynaecologist who referred me to the laparoscopy and who I saw once and then there was the doctor and the assistant doctor, who performed the surgery and who I also only saw the day of the surgery.

I think I might write a separate post on the forum because I found out some additional information after writing this post last week - it turns out they actually ended up not treating the endo, despite the fact that they had always talked about burning it away if it's small lesions and that I would be referred to an endo specialist if it was more severe. When I called and spoke to the secretary of the doctor because I had a few more question that I forgot to ask right after the surgery (where the lesions were etc.), I also asked if they did burn the lesions away. The secretary told me they didn't because I had told the doctor that I would go on the pill or the coil. I felt very frustrated and was quite shocked, so I didn't know how to react and just ended the conversation. I still feel quite frustrated and want to follow this up, know more about it (where there other reasons for not treating it etc.?) and make it clear that it's not alright.

I have an appointment with my GP but it's not until another 4 weeks, as the GP is on holiday and I don't want to see another one, who won't know me and might not be as supportive. I will ask my GP for a referral to a specialised endo centre in town, ask what I can do in the meantime and whether there is anything I can do about the whole coil incident.

Thanks again!