My discontinued miracle pill

[Char76]

So, I was diagnosed in 2005 (laparoscopy) endo in pouch of Douglas. Struggled until 2009 when I was put on loestrin 30. Pain free sympstoms for 10 wonderful years ( bowels always very very loose but no pain) until 1st Sept this year when I learnt that this wonderful pill has been discontinued. Now on a different one ( have tried 2 ) and wow my endo is back +++ so bad. Periods aren't the issue what so ever as dont have them due to taking pill back to back but my goodness it feels like my bowel and vagina are being pushed down, pains in legs and burning. Daily .Doctor wants to try coil before i see the gyny consultant. im 43 and so lucky to have 2 children .19 & 16. what's your thoughts my fellow friends ? Xx

[Christin_a]

I was in the same position as it was discontinued back in July. I had the coil fitted on Monday so it's too early to say yet. I'd already tried about 6 pills so knew I wasn't going to find an alternative that worked for me. So for me I decided it was time to give the coil a try.

[Char76 in reply to Christin_a]

Thanks Christin, are you still taking the pill on top? My doctor said I can if I decided to go for coil as I'm worried about getting headaches on top of everything else( which I do get if I take a break in the pill ) hope the coil works for you.

[Christin_a in reply to Char76]

I'm finishing my last packet whilst on the pill to avoid getting a period straight away, if I literally take my pill more than an hour later than normal I get bleeding, so we agreed I'd be dealing with enough let alone a period on top. But after I finish this packet that the plan is to just have the coil.

I'll be honest it's been a rough week I had it put in under GA on Monday (I pass out at smears due to pain with speculums so was decided the GA was needed). And it's set of an endo flare but as my body is also deal with the foreign object the pain is worse than normal endo flares. But I went to see one of my GPs today who has extra training in gynecology (super lucky to have this in my practice), she checked it was still in place etc and said that it's the combination of my body being tense from the coil (just my bodies initial reaction to it) and the endo flare. But shes confident that by Monday it will have eased. Others have also said that I'm likely cramping more as I've not had kids and those who have tend to cramp less. Don't want to scare you but would rather be honest about my experience.

[Char76 in reply to Christin_a]

Thank you for being so honest. Sounds like you've had a tough time. It's so difficult to get the right treatment. Lots to think about. Hate taking so many pain killers as now that's flared up another old issue I had with my stomache. You are fortunate to have an understanding GP who has the knowledge. Will keep my fingers crossed for you.

[_EndoWarrior_]

Unfortunately, the pill does not stop the growth of Endometriosis. I was diagnosed with Endometriosis in 2000 via laparoscopy (had ablation which I know now is just a band aid for Endo!) and put on Combined Contraceptive Pill. Helped with pain and my period was regular and bleeding manageable. 10 years later due to a blood clot had to come off the pill straight away. 7 years later Endometriosis symptoms started to worsen and so got referral back to a general gynaecologist. Had a second laparoscopy was told that I needed hysterectomy as I had extensive Endometriosis-Stage 4 with suspected Adenomyosis and large uterine fibroid.

Researched specialist Endometriosis surgeons... BSGE centres and Nook Drs.

Asked my general gynaecologist to refer me to a Nook Dr I researched nearest me.

Decided to get pelvic and abdominal MRI done privately to find out how widely Stage 4: Deep Infiltrating Endometriosis had spread. One of my newer and more debilitating symptoms I was getting each month was a burning and extremely painful dull aching in my lower back and right leg (down to my knee)which was not even relieved with prescription codeine tablets.

I’ve now had a total hysterectomy, bilateral salpingo oopherectomy and excision done with a Nook Surgeon who has extensive training in ‘minimally invasive’ Excision surgery.

Results of this major surgery was that I had frozen pelvis (due to D.I.E adhesions everywhere including my bowel).

From your symptoms I think you need an MRI to see if your Endo has spread to the bowel area and one of your pelvic ligaments or nerves.

The burning and aching pain I experienced

In my right leg was due to Endometrial nodule on my uterosacral ligament.

If you want to learn more about Endometriosis join ‘Nancy’s Nook Endometriosis Education Group’.

I learnt so much from this site and still learning. I must clarify that it’s not a support or discussion group simply educational.

You also have to answer a couple of questions as it is a closed group.

You are also given a week of reading the introductory files before ‘liking’ or commenting on posts.

Hope this helps you find out some answers!

[Char76 in reply to _EndoWarrior_]

Thank you for all this info. What a journey you have been on. How are you now? Have the symptoms eased since having the hysterectomy ? Also are you in the UK ? I've not heard of a Nook surgeon. I will join the group for sure!

[_EndoWarrior_ in reply to Char76]

In some ways I feel quite lucky as I haven’t had it as bad as some other Endo sufferers. Although now I know also that the amount of pain does not correlate to what stage Endo you have. Every individual is different too. For some the symptoms are almost silent. This is the reason I want my identical twin sister to get an MRI to check although it doesn’t always show up on these scans.

I’m almost in my 3rd month of recovery. It’s been quite slow. Healing can take longer for some and depends what has been done and where the Endometriosis was. I probably need another month or two but I’m feeling positive. My Endometriosis symptoms are almost gone. I obviously don’t have periods anymore (which is fantastic and weird at the same time!) but now I am in surgical menopause.... something new to deal with 😆 Not to bad so far!

The total hysterectomy sorted out my Adenomyosis , Endometriomas which I had on my ovaries and both uterine fibroids (which we’re pressing on my bladder). Excision removed Endometrial adhesions and fibrosis.

Yes, I’m in West Sussex.

If you join the Facebook group you can search through all the research files and surgeon reviews. The surgeon list is also in one of the files. There aren’t many Nook surgeons that are still practicing through the NHS unfortunately. However, you could go through a BSGE centre and see one of their Endometriosis specialists. 🙂

[_EndoWarrior_ in reply to _EndoWarrior_]

Another quite informative site is:

endopaedia.info/

[Char76 in reply to _EndoWarrior_]

Sounds like you are getting there gradually. Yes will make sure my next appointment will be at a BSGE centre for sure. Are you on any HRT? Also do you mind me asking your age ? ( you dont have to answer that)

We all experience different symptoms of endo which I guess is why it's so difficult to treat. I know hysterectomy is not for everyone . Keep taking care of yourself, I will look at that informative site. Thanks for sharing your knowledge

[_EndoWarrior_ in reply to Char76]

The waiting list for BSGE specialists is long but worth the wait if you want proper treatment.

Educating yourself on this awful condition will empower yourself and make you more confident in asking the right questions and for the right treatment for yourself.

Not on HRT at the moment. My menopause symptoms are not too bad but early days still. Due to my being on blood thinner I would only use a very low oestrogen gel due to risks. It is still concerning with the shortage,also at the moment, whether to start taking something yet.

I am 44 years young. 🙂

[Char76 in reply to _EndoWarrior_]

Roughly same age as me 😁 it's the younger ones I feel for protecting their chances of fertility. Well done you coping so well with no HRT, I think when one has suffered from endo it makes you a stronger person. 👍 Yes i will make sure i have all my facts and figures before I go to next appointment, I need to be prepared as when I was younger and last went I wasn't prepared for the interrogation.

[Char76 in reply to _EndoWarrior_]

Wow Nancy's nook EE site...amazing. Have learnt so much 👍 spent hours reading 😁 thank you.

[_EndoWarrior_ in reply to Char76]

I still haven’t finished reading everything 😆

I will continue to read and learn more and more though, so I can help fellow Endo Warriors.

As there is no cure for Endometriosis I still have to be vigilant even with the excision carried out.

Let’s hope with all the recent media coverage, Endometriosis gets the funding it needs and deserves so a cure is found.