Painful sex, bleeding etc: Hey, I was... - Endometriosis UK

Endometriosis UK
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Painful sex, bleeding etc

Hey,

I was diagnosed with endo about 2 years ago, and ever since then it has just been the bane of my existence!!! I have never had the most pleasurable sex life, but it got to a point where it got worse and worse. Eventually went to see my gp only to find i have stage 4 endo and cysts on my ovaries. I have had 2 ops already and had a scan couple of months ago, only to find that the cysts have returned again (surprise, surprise). I have been trying and testing different pills as my gp said i need to stop my periods altogether, so i take pills back to back. Thing is none of them seem to stop my bleeding. I have tried microgynon, cilest and currently on yasmin but its always the same thing - blood free for about three weeks or so, then constant bleeding afterwards. i have been bleeding non-stop for about 6 weeks now on yasmin and im just frustrated coz i feel nothing seems to work; and i believe it's not helping with endo either since im ALWAYS bleeding. I have turned down so many potential relationships just coz i couldn't bear the thought of sex. The pain during sex i went through in the past has truly traumatised me, and i don't want that to be the case. I would like to be in a relationship sometime, but i just feel like i can't because of the pain i went through in the past. I just feel so isolated and frustrated; the fact that i can't have sex any more due to pain, the fact that im constantly bleeding (very unsexy and awkward), the fact that there seems to be no cure or solution for my problem, is beginning to take a toll on me, and i can feel myself going down this slippery slope of depression and that's getting me very scared.

Please if anyone has any suggestions with regards reducing pains during sex and an explanation as to why i keep on bleeding through my pills would be greatly appreciated

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Hello :)

Firstly let me just say I get that feeling. A lot. Thankfully I am engaged to a very patient and understanding man but that seems to be quite rare and I can only imagine how I would feel if I wasn't in a relationship - I don't think I would even bother some days :/

Sex is painful to me but it's mostly after sex where I find the most pain and if I don't bleed during, I always bleed afterwards. I always have reservations about sex because I know I will be suffering for days afterwards but I am stubborn and refuse to let endo win!

When I had my diagnostic lap I was also diagnosed with vaginismus. If you're not familiar with it here's what NHS choices describe it as:

'Vaginismus is when the muscles around the vagina tighten involuntarily whenever there is an attempt to penetrate it.'

Here's a link to that page: nhs.uk/conditions/Vaginismu...

During my lap my consultant injected my inner muscles with Botox to relax them and this treatment usually lasts for 6 months. The thing with vaginismus is that is is also psychological and therefore you have to get over your fear of being in pain from sex/ bleeding etc. I haven't done that yet but I am getting there slowly.

As for the bleeding side of things - my periods usually last about 2 weeks and then I have brown spotting for at least a week and maybe I am all clear for one week per month. This does absolutely nothing for my self confidence as I am sure you can empathise with. My consultant has suggested I try the Mirena coil as (if it agrees with you) it's supposed to be really good. It stops your periods for up to 5 years and acts as contraception. You have to give it 3-6 months to settle but after that you should be good. It's taken me a long time to come around to agree with it but at 23 and with no sex life or sex drive - I'll try anything!

I have to wear a pad nearly everyday so I try to at least wear something a bit more pretty than period knickers! You can get some nice ones from Asda oddly enough that are no 'vpl' and are lacy and colourful which are quite cheap. It's really silly I know but it gave me a little confidence boost! Anything is worth a try.

I didn't see from your information if you are under the care of a consultant or if you just see your GP now. Might it be worth asking to be referred to a specialist endo centre (just do a google for ones near you) as clearly there are some issues that need to be addressed and perhaps you need to be under the care or someone who absolutely has the knowledge and expertise to advise you in your treatment options.

Finally - I started seeing a counsellor after my diagnosis as I was (still am some days!) incredibly resentful and angry about this disease and I also have interstitial cystitis. I feel like I have the mind of a 23 year old and the body of an octogenarian. Counselling has helped me a lot and has given me a much more positive outlook on life. It might be worth seeing someone who specialises in relationships and sex as it could break down some of the psychological aspects of what you are going through and help you beat this terrible disease!

Whatever you decide to do I hope you find a solution that works for you, that enables you to move forward positively :) xx

Reply

Just checked out the link you sent. Didn't even know there was a name for it but i definitely suffer from vaginismus coz i have all the symptoms; due to the traumatic experience i had, which affected me both physically and psychologically.

MY sexual confidence as well as libido has gone downhill aswell, its just the worst feeling ever, when you don't feel like a woman anymore; i feel like this disease has robbed me of my femininity :(.

I just see a gp now but to be honest i don't think they are of any help to me so ill push to be referred to a specialist when i go for my appointment, i definitely need more help and supervision that the gp cant provide me with. I do feel angry and resentful all the time so i think it's definitely gotten to a point where i might need to see a counsellor. Were you referred to a counsellor by your gp? Would love more info as to how to get that

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Just wanted to say I have the coil and for the first two years it's been great but now I'm getting problems, I've been bleeding for 3months so far but on the flip side it has helped massively with the pain, I was very happy with it thought it was the best thing ever, but now I have to get it taken out :( x

Reply

I totally feel for you :-( First of all the pill clearly isn't working for you. I had the exact same scenario and my GP advised me to stop taking the pill immediately. You would be better having your withdrawal bleed for a few days and then going back on it rather than 6 weeks of bleeding - this is completely defeating the purpose of running pills back to back. I'm getting the coiled fitted in a few weeks as this kept happening to me. If you're still bleeding when taking the pill, it's clearly not working. The longer you bleed, the worse it will be for your endo. Maybe look at an alternative pill or different contraception all together. Good luck xx

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i was on cilest for a while, had to come off that as i was always bleeding. had my withdrawal bleed and started on yasmin. was fine for three weeks or so then i started bleeding again, it was more of a brownish colour and my gynae said that it's nothing to worry about, just old blood trying to come out. problem is since last week, it started becoming a lot heavier and is more of a bright red now, which means that this is fresh blood, which is getting me worried. i honestly don't know what to do anymore as i feel like no pill ever works for me as ive tried a lot and it's always the same issue i have :(

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Hi. I was on the pill and I bled continually so I stopped taking it. I now have the mirena coil, it was fitted during my lap. You bleed for a few weeks but it does get better, and when you get a period ( some people don't ) it's so incredibly light compared to before, that for me is a blessing. As for sex, before my lap I absolutely dreaded it, it's suppose to be pleasurable but for someone suffering with endo, it's a nightmare, there's no pleasure in it whatsoever. I hope things start to improve myself one day.

Ask your GP about the IUD ( mirena coil) it might be your saviour, you have nothing else to lose. Xx

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i have thought about having the coil fitted but ive heard too many horror stories, about the continuous pain and endless bleeding. looks like i have no other choice but to get it fitted and see if it'll work for me, since nothing else seems to be workin. yes, sex is an absolute nightmare for people like us but hopefully some miracle happens in the near future

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Hi I have had endo for 3 years and I was bleeding everyday for 2 years. Unfortunately my endo can't b controlled with a lot of the pills cause I had a blood clot in my arm caused by the pill. I was offered the mirena coil which I had fitted when having my hysteroscopy. For the first 6 months of having this fitted I was in so much pain to the point where I was crippled in pain. I put up with this and after about 8 months it started settling down but unfortunately this hadn't stopped my bleeding. I was then given zoladex injections for 6 months which meant I had about 4 weeks of not bleeding in the 6 months. I was told by my Gynae that I have a nodule that is bleeding which is obviously causing me to bleed. I am waiting to have this removed so I can hopefully lead a normal life and have a less embarrassing sex life too

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