Help and advice please managing endometriosis (contraception free) how do you cope??

[herewegoagain18]

Hi there,

I was diagnosed with endometriosis in 2013 through laprascopic surgery. I have always had very painful periods from when i started them and by this time i more than suspected that i had endo.

I had been put on contraception about 5 years after period starting when meeting my now dp and it seemed to help manage it. I was on the pill 5 years then my doctor took me off the pill as i was suffering with symptoms such a low energy and low moods.

I found this flagged up something wrong as the pain started to increase with my period and previous effective painkillers stopped being effective. within six months the pain was dibilatating. The doctor just said womens problems.

Fortunately i changed doctors and the lovely new doctor suspected endo straight away he was very proactive in getting me tests and investigations which still took a year and i had the laprascopy.
I then had to have a further surgery for fibroid to be removed 10 months later .

I then started ttc with current dp and fell pregnant just three months after but sadly it ended in very early miscarriage at 5 weeks (dr classed as chemical pregnancy).

Took a three month break to get over the loss. Then we started ttc again for a year. In this time the pain become debilating to the point i was missing work and facing dissiplinarys at work. So at the year mark i went back onto the pill.

I felt down and depressed about it all but felt i had no real choice as the stress of worrying i would lose my job did not help. I came off the pill Jan/ feb 2016 and we have been ttc again since.

We got a refferal for fertility treatment summer last year and one funded round of ivf. We had the ivf earlier this year which failed.

My dp does not want to do another round or any further fertility treatments. I want to but also doubt how well i would cope emotionally with another round and potential failed cycle. I didnt deal with the failure well at all. Having counselling.

But realistically we cannot afford any further treatments for the forseable future .
So it just leaves ttc naturally.

Im struggling again though to manage each month with my period and symptoms. Previous to going back on the pill the first time I had near enough text book 28 day cycles (where i fell pregnant) and prior to the 5 years on the pill. It was like clock work so i could always predict it.

Now im having very short cycles (for me) 25 days. It does vary up and down a bit. Im struggling with more symptoms earlier in the cycle and also now getting quite bad headaches but cant say migraines and a kind of foggy head while trying to think and do simple things.

I dont feel people understand how it is for me. I missed out on some work the weekend just gone as thought and felt i was going to start and was in a lot of discomfort. Also have missed out on work for later this week as missed training today that i need to do it. My dp is annoyed as knows the manager and said i would attend.

The painkillers that have helped me previously have been mefanic acid which the doctor wont prescribe unless im on contraception and not actively ttc.

This teamed with the pill did help to make things more mangable and i could predict at least when my period was due.

The other is co-drydramol which helps but not as effective .i just end up feeling either sick with pain or sick due to dosing myself up on them so much.

I have tried acupuncture which was a bit hit and miss some months. Sometimes it did help to lenghten the cycles also a little but not consistently. That has no longer become possible to continue due to finances.

I dont want to go back onto the pill or any other hormonal contraceptive as this will obviously hinder ttc.

I dont know if there are any other things i can try to at least lenghten the cycles and hopefully make them more predictable?.

Ideally i would like to try managing the pain without pain relief but not sure how possible that is?

Any suggestions welcome im at the end of my rope with this

Sorry its so long and thanks so much in advance for any replys
Xx

I have had severe endometriosis for years. About 20 years ago I was advised by my consultant to do an exclusion diet to help keep the gut calm which can help with easing some of the endometriosis pain. You gradually jntroduce foods to see which you can/can't tolerate in terms of how uncomfortable you feel. In my case I was never able to reintroduce wheat as it caused increased pain amongst others things There are a number of publications related to endometriosis and diet, with many recommendations of foods that can help ease symptoms. Also taking up yoga/pilates is often recommended to help ease the symptoms

Hi Cbwick

Thankyou so much for your reply I had thought maybe i have posted in the wrong section and wouldnt get any replys.

Its really helpful advice thankyou.

Im sorry to hear of your severe endo thats awful for you though it sounds like you had some support from your consultant which is good.

I had a good consultant dealing with me but was discharged a few months after surgery to 'manage' the remainder of the symptoms with painkillers and exercise .

I was reffered for the fertility treatment initially because of going back to see my doctor last year about the Endo as it was affecting my work and life again.

I see a lovely consultant who asked about my family plans and when i explained as in the above op she said to come at the endo from a diffrent tack. She said to focus on fertility treatment to get the family i want then to look at treating the endo possibly with something more invasive again.
Its just unfortunate i had a hit a bit of a brick wall there.

I will look into all your suggestions . i forgot to mention in op i do have ibs aswell and it is defiently at its worst leading up to and while im on. So it could benefit me in more ways than one.

I hope you are in a better place with the endo as it never really goes does it, just has to be managed as best as possible. I really admire you . Thankyou again xxx

Xx

We're just moving this to women's health at the OP's request.