Advice Needed

[Lara19]

Hello,

I’m after a bit of advice. I’m getting really bad pain when I ovulate. It usually starts about 4 days after my period endsand lasts for a few days (anything up to 10). The only way to describe the pain is like contractions. It lasts for about 20 mins at a time and builds and builds until I have to get up and pace. It wakes me up at night and I have to get out of bed as it’s so painful. It’s not the same as period pain.

It started about 6 years ago after I had my third child. I’d always had heavy and really painful periods before that. I was diagnosed with PCOS about 20 years ago so my periods were always really erratic. Since having my third child, they have become fairly regular (30 days). Since having children, my period pains seemed to have disappeared. I went to my doctor about my pains and I was fobbed off a couple of times with them saying it was mittelschmerz. I would have accepted this were it not for the fact that it goes on for so many days and is so painful. One month i had some mid-cycle bleeding so I went to the docs and was sent for an internal scan. It showed that all was okay with my ovaries and that they were no longer polycystic. I was told that I have a small fibroid but from what I’ve read, these cause heavy periods - and not pain - and mine aren’t as heavy these days. I also have a tilted womb (backwards).

Over the last few months, I’m starting to get period pains again. They’re not bad, more like dull aches but they seem to be getting more frequent. I’ve also been getting an orangey, clear discharge (mid-month) which I have put down to ovulation but about a week after this, I had some darker red discharge. When I get my pains, they are mainly right sided and the pain radiates right down in to my lady bits. I also get shooting pains up my bum when ovulating and sometimes on my period. When I get the pain, my stomach bloats right up but goes down once the pain has subsided.

I guess what I want advice on is can the pain of endo be worse around ovulation than when you have your period? Does anyone think it would be worth me going back to the docs? They make you feel such a fraud sometimes 🙁

Thanks.

[marti323]

Lara I have read that some people get worst pain during ovulation than during their period. Have you considered having surgery done by an expert excision surgeon?

[Lara19 in reply to marti323]

Thanks for your reply. How would I get a referral for that - do I just ask the doc or is private?

[marti323 in reply to Lara19]

There’s a Facebook group called Endorevisited - UK support group. There’s some info on there about excision doctors. Nancy’s Nook on Facebook also has a good list. Check then out. Lots of good info.

[Tillyfloss]

hi. Yes I got awful pain around ovulation as well as my actually period. The endometriosis specialist I saw said it was common especially when you have cysts which I did. For me it went into my back and down my legs to, I was taking 29 pills a day and regularly being admitted to hospital for pain management. Unfortunately it is often over looked, I've even had a&e doctors say they hadn't heard of endometriosis and I had to explain it 🙉. Xx

[Lara19 in reply to Tillyfloss]

Thanks for your reply. I can’t believe a&e doctors haven’t heard of endometriosis!! It’s like anything that is only experienced by a woman is deemed normal - part of being a woman!! So far, the health care providers who I feel have fobbed me off have been men. I know there are some amazing male gynae’s so not knocking them all but some do make you feel like you’re making a fuss! X

[Tillyfloss in reply to Lara19]

hi hope you're having a good day. I'm my limited experience ( only got diagnosed in September 16) I get the impression it's down to a lack of understanding about how serious endometriosis can be ( the complications I had was nearly fatal due to poor doctors). Thankfully I have a good friend who's at the hospital and on him coming back from his holiday I was operated on within hours and just in the nick of time. Both the a&e doctor and the nurse who told me I was time wasting both got pulled up on their behaviour and hopefully learnt something from it. I got referred to a bsge centre and it was amazing totally different experience 😊. Hope you get some help, don't give up being in so much pain isn't normal. Xx

[fay144]

Yes, this is exactly what my pain is like. I didn't think it could be endo, as I didn't get much pain during my period, just mid-cycle and in the week before my period.

Luckily, my gp referred me to a great gynae.

I've tried the mirena, which helped the mid-cycle pain a bit but made the period pain worse. So I recently had a lap, where they confirmed endo and I'm waiting for a follow up appointment to see what (If anything) they will do next.

Definitely push for a referal to a specialist.

[Lara19 in reply to fay144]

Hiya, thanks for your reply. You sound similar to me - just out of interest where is your endo? I can’t take the pill because of migraines. The gynae told me that the progesterone only pill would be fine. I told him that the last time I took it (about 15years ago), I had 3 visual migraines in one week so I stopped it. I also tried the Mirena coil about 6 years ago and in week 5, I had a visual migraine. I hadn’t had one in two years before that but he wouldn’t accept that the progesterone only pill had caused them. I couldn’t be bothered to argue with him - I know I’m right 😂 x

[fay144 in reply to Lara19]

My endo is on my left uterosacral ligament, bowel and colon. My pain was mostly left side, so I guess it is the US ligament causing my pain, though I sometimes get it to a lesser extent on the right too.

Funnily, I can't take the pill now either. Which is a shame, as I took microgynon for 10 years and was fine all that time.

Hopefully you will get a referal quickly.

[Lara19 in reply to fay144]

That’s interesting: my right side sacroiliac joint always gives me trouble. I put it down to a very long labour with my third child and her being back to back for most on the pregnancy (and birth), but maybe it’s related. My right side seems to have all of the pain. Thanks for your help 😊

[StefaniaJW]

It does sound like endometriosis, but it sounds like something else might be going on (probably around the tubes).

I suggest you seek an EXPERIENCED ENDO EXCISION SURGEON as soon as possible (join the Nancy Nook group and check out her "!Surgeon International" file to find one in your area).

[Lara19 in reply to StefaniaJW]

Hiya, thanks for your reply. I did have a look for one of the endo hospitals in this country and there is one about an hour from me. Can your doctor refer you straight there or do you need a diagnosis from a normal gynae first? It does feel like it’s my right ovary or tube. I read somewhere that when you ovulate, you’re Fallopian tube moves to aid the eggs travel. I almost feel that when this happens, the tube is getting stuck on something or is rigid so can’t move. I been getting more spotting the last couple of days and it 7 days until my period so I think I will go back to the doctors 🙂

[StefaniaJW in reply to Lara19]

I have no idea how it works in the UK as I don't live there, luckily for me.

You should either ask your GP or ring the hospital directly and ask for information.

Non-endo specialists will not be able to help you if it's endometriosis unfortunately.