I first started having symptoms at the age of 20 after coming off the pill due to constant regular bleeding. Which in the long run exposed lots of pains and eventually 3 weeks stuck in bed with fatigue, headaches, bloating, dizziness and even black fog over my eyes if I stood up to fast.
After ongoing appointments changing pills I got to one appointment where a doctor said 'so I can see youve been diagnosed with endometriosis' which was a shock to me, I had been told that this was most likely in previous appointments but I had never been sat down and told this is what I have.
I believe I do have endo but there is no proof, they have decided this due to there being no cysts or alternative problems after ultrasound and trying ibs treatment.
I have found certain pills make me feel better for a while then the endo just comes back and I have to change pill which is horrible. I got told I am too young to have a lap done (21 at the time, now 22)
Sometimes it's the not knowing if it really is endo? Sometimes I am made to feel I am making it up or don't believe myself anymore.
Has anyone else gone through something similar? Or recommends a way to go forward with this. Thank you.
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Daisyjuke
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I have a feeling, that without having a look with laparoscopy to diagnose endometriosis, the GP might have meant that you may have suspected endometriosis (it needs to be seen do give a definitive diagnosis).
Your pain and symptoms are not in your imagination. I can assure you of that - none of us would "prefer" to feel pain and fatigue. We do get used to trying to cope with the pain, and that kind of gives false sense that it's "normal" to hurt. It's not normal.
I had the strange experience of going to A&E for mystery pain. They thought it might be appendicitis, and took me in for surgery. When I woke up, they asked me if I knew what they did. So, I asked f they removed my appendix like they said they would. Nope! My appendix was fine, but they washed out a ruptured endometrioma (cyst had been on ovary). I went home, and hoped that was the end of the story. Nope! No one coached me on where to look for information or how to follow up. I didn't even know I had endometriosis, but I kind of suspected I might because I found the word when I looked up endometrioma.
So, what I would suggest to you now (and my past self), is to have a look at the Endometriosis UK website, and maybe start with the informational video on Endometriosis where a gynaecologist explains it. She is so clear and informative!
Once you feel informed, that's a good time to ask your GP for a referral to a gynaecologist, preferably one who specialises in endometriosis. From there, you might like to ask questions about: pain management, hormonal treatment, and surgery.
You can even ask your GP about pain management (eg ibuprophen, buscopan for cramps, mefenamic acid, etc.) and hormonal treatment (eg Mirena coil, combined pill, mini pill, etc.) before you are on the waiting list for the specialist to give yourself a boost to cope while you wait.
I did notice in your description that you've already been trying different pills. In the NICE guidelines, there's a section on hormonal treatment options - there's one for patients, and one for clinicians. You might be able to have a look at the table, and identify which you have tried, and which not.
I searched like mad for a single hormonal treatment "recipe" and didn't find one. It's because different approaches are suggested for women of different ages, and different health conditions. This is where reading about them and discussing with a gynaecologist may help.
I'm sorry you're going through such a distressing time with it! And it's bad management that the doctors never actually told you they are quite sure it's endometriosis!
It seems that as soon as you can have a laparoscopy this may do you a favour in confirming the diagnosis and finding out what's going on in there - however I don't know at what age they consider they it is safe to do that procedure.
Feel free to take this with a grain of salt as everyone's body reacts differently to hormonal interventions (and you may have already tried this), but here's my experience. My consultant recommends a combined pill as a blanket "fix-all" option. However I find that the one that works for me is a progestogen-only pill which stops ovulation and stops my periods, meaning I have no period-related pain. My consultant just said if that's what works for me, carry on with it.
I'm curious because I'm taking the mini pill route too (in my 40s and have migraines, so no combined pills for me).
Mirena & mini pill
I'm trying the Mirena coil because it's localised with lowerside effects, plus some research indicated potential reduction in endometriosis for some women. However, it only suppresses periods in about 20% of women by the end of the first year... So I imagine that although reduced, there is still activity in endometrial tissue.
I checked with my GP about period supression, and she let me know it's safe to add the mini pill with Mirena. So, I've started Cerazette (1 a day) in addition, and I'm sincerely hoping to start skipping my period in a couple of months (I read it can take 3 to 4 months to settle into a new pattern with hormonal treatment, in general).
I tried the Nexplanon Implant which the doctors told me was exactly the same as desogestrel and it messed. me. up! Prompting me to request that my endometriosis was investigated and diagnosed.
So I went back on desogestrel and it works really well for me. Immediately upon taking it, my periods cease, though I know that not everyone has this same experience.
I guess, reading your experience, I would exercise a little patience and see what happens with Mirena and Cerazette. Annoyingly it's the "wait and see" approach, where it can take 3-4 months to settle, like you said - it has driven me mad in the past! So, lucky for me that desogestrel has an immediate effect! Haha.
Thanks Jemima. Ah, the wait to see if it works. Yes, you're right!
Of course, I want to know everything immediately.
The objective near and dear to my heart is to stay out of A&E for endometriosis pain. It must cost the NHS a bundle, and it's not a fun way to spend the weekend. It terrifies me that the "do nothing" option for me, I think, would land me in the A&E for the first period day each month. Hence, my sincere search for endometriosis management - with a focus on the short term pain relief and hormone management while awaiting an MRI scan and a plan following that.
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