Newly diagnosed and would like some help!

[at123456789]

Hi, this is my first post here. Recently I was told by my GP and a gynaecologist that I MAY have endometriosis. I've been told to start taking the contraceptive pill and see if it gets rid of the immense, deep pelvic pain I get during sex.

I just masturbated for the first time in months and had quite intense period cramp-like pains after orgasm. So bad I felt like I could have vomited if it went on for any longer than it did. Does anyone else get this symptom? When I look up symptoms online, what I see are things like general pelvic pain, bleeding, pain with bowel movements or urination (which I have had on and off for a few years). But I was wondering if there are any other symptoms that are sort of under the radar? Anything to do with orgasm, problems holding in urine, decrease in libido? As I have problems with those things and was wondering if any of them could be related to the endometriosis or if they're problems that I need to sort out separately.

And I see on here that a lot of you have had surgeries - does that get rid of the endometriosis completely or can it return in future? And does anyone know if just taking the pill will fix it?

Thank you so much for reading and any advice you can suggest!

[Johanna1618]

Hey there, so sorry to hear that you are suffering on the orgasm front, this must be frustrating and I imagine this could lower your sex drive. I myself was diagnosed with endo in September so it’s all new to me too. However what I can understand from the research that I’ve done is that endo can cause so many problems and symptoms vary from person to person. Obviously pelvic pain is a common one along with other ones you may read on medical sites, but I have noticed holding in urine to be harder and have suffered with my bowels for years now which I think are completely related. I had a laparoscopy done in September which was the official diagnosis, they removed the endo, but there is a possibility it will come back and I am still in some pain. I personally haven’t gone on any pills as I was worried about it affecting my mood, however all these things are trial and error. I swear by wheat bags, Advil and regular baths for pain relief but it’s still an everyday struggle. Hope this helps and feel free to ask any other questions

[Emcox in reply to Johanna1618]

Hi I’ve not been diagnosed with anything yet but joined here because my symptoms match up but i have very similar problems to you, i get period like cramps after i mastrnate and orgasm not every single time but usually if its just before or just after my period. Ive also had problems with libido on and off the pill and had problems with my bladder since i was teenager? I find some drinks make it worse and it’s something that is also bad on and off the pill. O think i have an overactive bladder but only just started looking into that problem too but i think it could be all related.

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I find I feel ill after orgasm and can't wee for a while after, like the muscles just don't work! I've been on the pill for 3 years and it's not improved, but due to have a Lap in 4 weeks to hopefully find out x

[MissK8]

Hey Hun, there is not a definitive way to get rid of endometriosis, the pill can help manage the condition. I had pain after sex, and recently found out I have a cyst, it will more than likely turn out to be an endometrial cyst (chocolate cyst). The number of symptoms I get from my endo is unreal. It took me quite a long time to realise it was all connected to the one condition, that was actually quite a relief as I only have one thing wrong, just loads of different symptoms. I had surgery in 2008 to remove endo, I had a baby in 2015, between surgery and baby I was fairly symptom free, after baby I went on the pill, and yet my endo is back with a vengeance. Waiting to see the gynae in December (long wait lists round here) to discuss where we go now. Endo symptoms and effectiveness of treatment, will vary from person to person. Just don't accept living in pain, make noise if your doctors are not helping you enough. Xx

[Johanna1618]

I definitely agree, don’t sit in pain. I had to be back and forth at the doctors and I just kept repeating the symptoms and had to get quite direct with what I want doing. It definitely is different for every person and you can experience so many symptoms, I’m still figuring out some of mine still. But it can range from nausea to rectum and bowel pain, to problems with pain after or during sex to feeling low and tired. The list can go on and on and so many symptoms are not listed on medical sites, I didn’t have any problems with my periods in terms of irregular bleeding which can be another common symptom. So never think that what your experiencing might be wrong, just keep persisting and also NEVER feel like your being a hypochondriac! The amount of times I’ve been called this is unreal or people would say you’ve always got something wrong haven’t you. But they just don’t understand how much and how frequent this condition can affect your daily life! Keep strong and don’t suffer in silence 💪🏼💪🏼💪🏼

[Bella29]

Hi there. Us women can have different types of orgasms but the usual deep one actually relates to uterine spasms. I read that when uterus is removed, this type of orgasm doesn't occur. So it makes sense that orgasm can be painful for us especially at certain points in our cycles. Endometriosis also often affects top of vagina, either directly, or due to inflammation or compression.

I too have to pee problem and really thought I must have endo of bladder or something. Ive had bladder scans when post lap and they showed that when I feel fit to burst, I only have about a quarter of what should be in my bladder when I'm bursting for a wee! Consultant said its just general inflammation and compression due to endo in other areas. No endo showed up there on my mri.

Unfortunately endo can always return, even after a total hysterectomy. This is cos its caused by oestrogen and the endometrial deposits and endometriomas themselves continue to produce the hormone. Also we get exposed to oestrogens from animal products and also plastics (xenooestrogens).

There are ways to reduce rate and severity of return of symptoms but its not an exact science and seems to vary alot person to person.

xx

[MaryLou11]

I also have very intense pain after orgasm. I have an overactive bladder too, but they’ve said there’s no endo on my bladder. I fully believe both these symptoms are related to my endo! Keep on pushing for your diagonisis x