How to decide on what treatment to go for with endometriosis?

[rachhow]

I went to a private doctor and discussed my treatment options of hormonal - having the coil as the pill in not an option for me or a laparoscopy. Im thinking maybe trying the coil as going private with a laparoscopy would got thousands but with the NHS I could be waiting another two years.

[Gardenist]

Hello I would say, especially given your age try the coil and get on an NHS waiting list for the laparoscopy. If the coil works then you have avoided major surgery. If it doesn't work then you have already tried it so when they do the diagnostic laparoscopy then you will be then thinking about other options. Endometriosis has been a lifelong condition for me. I managed it conservatively for years in order to have children and then more radically after. It's worth trying everything. The coil didn't work long term for me but it did give me pain free years. Hope you find some relief.

[rachhow in reply to Gardenist]

Hiya, yeah that’s what I’m thinking, no harm in trying it and it doesn’t cost anything!

[Ionaboaty]

Hi Rachrow,I’ll share my story to give you insight of my experience instead of me telling you what to do. I have personally found that the best treatments have come through intuition and really tuning into your cycle and body.

I was diagnosed with stage IV after 8 years of visiting the dr. I experienced all the gross side effects. I was put on the implant which after 3 months I had removed because it affected my mental health terribly.

The big change happened for me when I became a vegetarian (and stopped drinking cows milk, oat is best option as soya contains estrogen which is bad for endo) - I literally had no pain for 2 years.

I foolishly then started eating meat again and guess what….endo flare up! Now I have an endometrioma on my right ovary.

Take from this what you will 😊 and best of luck to you ❤️

[rachhow in reply to Ionaboaty]

Hi, thank you! I’ve read up on changing my diet and I am going to be making changes. I can think is it so simple to do so I may as well give it a go!

[Nelly_Star]

Hi rachhow

I just wanted to say that hormones are not a treatment option, they mask the symptoms but don't reduce or cure endo. It's an important distinction because the endo can continue to grow while on hormones but it may do so more slowly.

But that doesn't mean they are not the right option for you. You just need to be aware of the difference. This is because endo can progress to other organs (in my case my bowel, fallopian tubes, ureta, womb) and cause long term issues such as ibs and reduce your chances of pregnancy.

Total removal is the only treatment for endo. If you are going down the laparoscopy route then there are some important things to note regardless of whether you go private or NHS. If endo is suspected or has been diagnosed as mild to moderate you must be operated on by a gynaecologist who has an interest (ie additional training) in endometriosis. If you have severe endometriosis (for example affecting the other organs). You must be operated on by an BSGE endo centre and may need more than one surgeon. This is important because if your lap is a diagnostic lap done by a general gynaecologist they must not proceed with removal of the endo unless they fulfil the criteria above. The NICE guidelines on endometriosis outlines the care pathway for endometriosis

.I had a coil fitted after my lap. My gynaecologist told me my symptoms wouldn't be cured before the op. It hasn't worked for me but it does for lots of people. I'd say if you want to manage your symptoms either to delay or while you wait for a lap, then give it a go. You can always have it taken out again.

Good luck xx

[rachhow in reply to Nelly_Star]

Thank you so much! Yeah the private doctor I went to specialises in endo so can trust him. Yes I do want to try the coil but am worried as there are obviously disadvantages to it but there is to everything! Xx

[JulesUK]

A different perspective from me- I can honestly say without hesitation that the coilchanged my life. I was at rock bottom and had tried the pill, Zoladex twice and read all the books and followed what was suggested as the optimum diet for endo but it didn’t have an impact on the endo. I will say zoladex did help a lot whilst I was on it (I’m not sure if this has been mentioned to you and it’s worth considering? ) but when this stops the endo came back quickly for me. I had to change doctor and she recommended the coil (which had not ever been suggested in all the time I’d been seeing the other doctor or at any of my previous operations). I was very fortunate that at the time I had private health insurance so I had a laparoscopy to remove my endo and a coil inserted. It was painful for a few weeks but within months the pain and bleeding had stopped. Of course the difference is that I also had the laparoscopy at the same time to remove the endo and I’m not sure how yours is, but I’m now at the end of my second coil 9 years later (4 yrs and now 5yrs) and have had no serious/major endo symptoms in that time I say that the coil gave me my life back. Unfortunately it’s only now my coil is “expiring” symptoms are all coming back and I am awaiting appointments and hopefully a replacement via NHS. I know from this group that the merina coil isn’t for everyone but for me it’s been the best decision I ever made. Long post but hope it helps to give you a positive perspective.

[rachhow in reply to JulesUK]

Wow! Yeah I am definitely looking into it! I obviously don’t have the money right now for private surgery or cant wait on the waiting list for the nhs which is at least 2 years! Thank you!

[Dinah_lady]

Another perspective from me..After suffering awfully with endo for over 10 years, I went on monthly Zoladex injections for 18 months. I was 30 and it changed my life. After 2 months I started HRT and that cancelled out most of the menopausal symptoms.

Over the 18 months, I cut out red meat, wheat, acidic food/drinks, dairy and soya. I was able to swim and do yoga more, without pain. Over that time, the endo shrunk back. I began living a nearly pain free life.

10 years on- I do not require painkillers, other than sometimes paracetamol. My quality of life improved after Zoladex. Maybe I am lucky and in the minority, but the days of rolling on the bathroom floor and being in too much pain to sleep or walk are loooong distant memories. My IBS has improved too. I should mention that the endo was found in my bladder and my gynae said my symptoms meant that it was also likely in my tubes and on my ovaries. They would not operate at the time as there was risk to damaging my bladder.

Whatever you choose, good luck. The right treatment can be life changing.

[rachhow in reply to Dinah_lady]

Yeah I’ve been looking at changing my diet! I do definitely feel like my current diet does have an affect on my endo! Thank you x