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Treat my Endometriosis with contraceptive - or carry on TTC?

(4 Posts)
UnGoogleable Sat 22-Aug-15 14:50:40

I was diagnosed with severe endo and a frozen pelvis through a laparoscopy earlier this year when I had a chocolate cyst removed.

Since then, I've been suffering chronic pain, and severe period pains - much the same as I was before the lap, no improvement at all. I'm very worried that my cyst may have come back.

The only medical treatment for endo is to stop your periods to let it all calm down for a bit. After my lap, the Dr did offer me this, but as I'd been ttc for 2 years at that point, the thought of actually going on contraception just felt wrong. Time is running out for me, I'm in my late 30s, so I just didn't want to delay it at all.

I was told that the dye test showed no obstruction, so no obvious reason why I shouldn't conceive (apart from the frozen pelvis pushing everything out of whack). So I carried on ttc, but have had no hint of a BFP. My Drs have given me to the end of the year to ttc, after which they've said they'll refer me to a fertility clinic.

However, I'm seeing the Dr next week, and I'm wondering whether to ask for contraception for a few months to just let it all settle down a bit before going to the fertility clinic (which will start the ball rolling for IVF). Is there any benefit of doing this - will it let my endo shrink a bit?

Obviously I don't want to compromise my fertility at all, so I don't want to go on the pill if it means any delay to starting IVF. But the thought of being period free and therefore less pain for a few months is appealing.

I also feel like I could do with the mental break from the constant cycle of ttc, 2ww, disappointment, horrendous period, start all over again....

Does anyone have any experience of doing this?

sunshineonarainyday1 Wed 26-Aug-15 20:58:40

Hi Ungoogleable

I have severe endometriosis and TTC for 3 years before having successful IVF. I found out I had endometriosis following infertility investigative lap and dye Oct 2012. After my surgery I went on to have horrendous period psins which I had never had before. I'd take tramadol for a couple of days each month. I was referred for IVF but was advised it would take 18 months before treatment would start. (6 months before I'd get initial consultation and 12 months after that treatment). In the meantime I was told to carry on TTC. We decided to go privately for IVF and my consultant wanted more info about my bicornuate uterus that I had been diagnosed with at same time as endo. I had another lap sep 2013 and in the space of 11 months the endo was back and was severe again. I then went on to have IVF successfully thankfully but my point is that endometriosis can return quite quickly if you do nothing.

Once I had my daughter I asked my consultant what I could do to prevent the endo coming back and he recommended breast feeding and the mini pill. I ended up express feeding my daughter until recently and have been on the mini pill since her birth.

Sorry for my life history.... Basically what I would suggest is asking your gynaecologist to put you on IVF waiting list now and tell him you're going back on the pill! I found throughout my whole experience of TTC is that I had to take control of the situation. I would say that you're in too much pain each month and think that IVF is your only answer to conceiving and you need to be put on the list Asap. Some clinics use the pill to down regulate you so wouldn't affect actual IVF treatment. I plan to go next month to the clinic to talk about treatment again and will still be on my pill until they advise me differently.

My husband is a gp (and lots of areas do things differently) but I've just asked him what he would do if you saw him in surgery, and he said he would prescribe you Cirelle and refer you for IVF!! You could try your GP if you get no joy with your gynaecologist?

Good luck. I'll be interested to hear how you get on xx

UnGoogleable Sat 28-Nov-15 01:15:26

Hi Sunshine, I'm so sorry, I totally missed your post until now!

Thank you so much for your reply, some great advice there. I'm so glad to hear that you had a good result.

So my situation has changed a bit - after I wrote my post, I had another scan and they found that my cyst had returned to its previous size, just 3 months after my laparoscopy had drained it.

So, I was referred to an endo specialist, and will need another lap. I'm seeing him in a few weeks (yes, it has taken since August to wait for my appointment!). I've also been told I'm being referred for IVF as soon as I'm done with the lap.

As it happens, we're not eligible for IVF on the NHS (it's complicated), so at least I'll be in control of when we start and won't have a long waiting list to deal with.

After reading your advice, I think I would have been better off going on the pill and asking for IVF. It would have saved me from months of pain, and another laparoscopy. sad

Everhopeful76 Sat 28-Nov-15 14:29:36

Hi Ungoogleable

Am really sorry you ve had to go and are continuing to go thru this, I feel your pain and the need to have another laparoscopy so soon after your last is awful. This happened to a friend of mine recently.

I also have endo which was found when I had a private fertility MOT back in October 2014. I had to wait till March for the op as reverted back to the NHS waiting list for the cystectomy. They had already seen the 7cm chocolate cyst on my left ovary from the fertility scan (so at least I didn't have to fight with the GP for a referral because the results were glaringly obvious). They incidentally found loads of scar tissue pushing onto my bladder which was never confirmed as endo, but I feel probably was. I was still in chronic pain for a good few months after and thought I had developed another cyst.

Fortunately I didn't but even now I still can have acute pain (scar tissue could have come back and only a lap would resolve this) but I do know it is dormant in my ovaries, although just for fun I have 2 small cysts on my right ovary, which are just a common type of cyst and not endo. Endo is a bitch and so debilitating.

I was offered and actually got the prescription for cezarette (mini pill) a few months ago from my Endo Gynaecologist to regulate my periods/deal with the pain but by then my priority was having a baby (am in my late 30s too). I ended up settling for more natural all fairness more to regulate the cycles because they were all over the place in the months after the op. The pain started to abate a bit after my cycles regulated, although still by no means perfect. The pain got a bit easier when my cycles were more regular but I have had a few episodes of general screaming.

Have you had fertility testing of any kind? Such as fertility blood tests through your GP? And also if you went for an fertility MOT privately they would do a trans-vaginal scan to look at anteral follical count and complete an AMH blood test? If you can afford these tests privately now it might help you make an informed decision as soon as your lap is complete as to next steps and how quickly you need to move. I personally decided against it, but then I have difficult fertility so felt I didn't want any more hormones in my system, other than the IVF.

We are all different. I hope you get the laparoscopy soon and the fertility referral asap. Let me know how you go. Take care

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