Pelvic Pain Support Network
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Prolonged bleeding and weird pattern

I have light bleeding (more than spotting but just enough for a panty liner, bright red) for ten days before my period. Then my ‘period’ starts, 2 days heav/medium then 3-4 days light then done. I also have pain all month long.

Progesterone, vit B etc. all the usual things have no effect and I can’t take the pill.

Hormones all ‘within range’.

What could this be?

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Hi,

You haven’t said what age range you are or how long this has been going on. The normal range of hormones will differ according to what age range you are in. You might be considered perimenopausal if you are in your 40s. It’s not considered abnormal to have an abnormal bleeding pattern if you are in this category. Bleeding like this can happen at any age and it is a case of sometimes persevering with the medication. Most hormone based medications won’t start working immediately they usually take a minimum of 3 months of continued use and in some cases won’t start working completely until 6 months. Have you tried the mirena? It is progesterone based and many find that this works for bleeding and pain even if the progesterone pills haven’t worked. If you don’t like the mirena you can have the implant which is again progesterone based and goes in the arm. I do think it’s a case of going back to your GP and asking what they think it could be and what they intend to do treatment wise. If you haven’t given previous treatments enough time to work it maybe that you need to retry them and see how you get on with it. I hope this helps

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Thanks for your reply. I was advised by a couple of my doctors that the hormone based treatments work within a month... but who knows. I tried for three months and just got worse. Mirena made it worse too. As did implant. I would not say bleeding 17 days out of 28 is ‘normal’ at any age. It’s been two years and I’m late 30s. Tests showed not in menopause. I’ve given up going back to doctors as they just suggest pain management and hysterectomy.

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I’ve had all of those treatments you have mentioned and it takes at least 3 months with the mirena being advised for 6 months. Perimenopause isn’t the same as menopause. Many women show symptoms such as spotting which you have actually mentioned which isn’t considered to be actual bleeding to be symptomatic of the perimenopause. If it was related to this it would be considered normal. I would ask your GP if this has shown up in your blood tests and it might be worthwhile asking for another test. I had actually period not spotting which would last for 3 weeks out of every month ( I have a diagnosis of endometriosis and adenomyosis). When counting how many days you bleed in relation to a period you only count the number of days of actual bleeding and not spotting. So you mentioned in you post you bleed for 6 days which is entirely normal and spot for 10 days before period. This is what you would report to any doctor, not that you bleed for 16 days as that is misleading for them.

In relation to a hysterectomy 50% of women who have one find their pain still continues afterwards which means that their pain was non gynaecological in the first place. I would ask to be referred to a women’s health physiotherapist either on the nhs or you can self refer privately. I have seen a private women’s health physiotherapist and found to have overly tight pelvic floor muscles which is referred to as pelvic floor dysfunction. It really helped. Also as you haven’t at this present time got any sign of gynaecological disease and your bleeding pattern is entirely normal ( I get the spotting is annoying) it’s unlikely they’d agree to carrying out a hysterectomy. Has a gynaecologist suggested this? I’d ask for a second opinion if this is the case. You are entitled to ask for one if you are unsure on the proposed treatment suggested. . Even if they did they might ask that you actually take some of the previous medications for at least 3 months before saying they didn’t work. The NHS has clamped down in the number of hysterectomies they carry out as it doesn’t just come with physical complications such as increased risk of heart disease as oestrogen is protective for this, risk of bladder prolapse but it comes with psychological problems even if you have finished your family ie lose of femininity etc. I hope some of this has helped

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Thanks so much for this advice. It has given me much to consider.

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Could you have an erosion on the lining of your womb? I had all your symptoms and I had it cauterised hrat treated under anaestetic and I believe I was 24 or 25yrs old. Sex was painful too and I bled after it quite often.

The bleeding in between periods stopped as did the pain and bleeding during sex.

My periods continued to be horrendous and Karen's did not work for me at 26yrs old my body screamed rejection, constant pain and bleeding and after...wait for it...7 months of hoping it would settle it did not and I had it take out at family planning clinic with great delight.

Contraceptive Pills do not agreed with me either on any level. The best I did was dianette the 1 for acne control but again short lived.

Last year it was found I have Adenomyosis. 3 bulging discs in my lumbar spine as a result of....

I have had monthly increasing painful periods and heavy since giving birth 3.4yrs ago.

I'm on NHS waiting list for Oopherectomy which is total historectomy .

I'm 39 and have had my only child who has severe Autistic Spectrum Disorder.

My menstrual pain is now apparent all month and I have chronic lower back pain.

Good luck.

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Marena did not work for me*

*heat treated

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Thanks so much for your reply. Erosion of lining of womb? I’ve not heard about this before. When you said treated with heat, I thought you meant endometrial ablation (where they burn of the lining of the uterus) but then you went on to have a child after that so it can’t be that procedure as it makes you sterile. Can you tell me more about the procedure you had and the diagnosis? Thanks :)

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How did they diagnose your Adenomyosis? One gyn told me I had it then another said not after MRI was negative.

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Ah, do you mean a cercixal extropion (erosion)? I do have that but told it doesn’t explain most of my symptoms.

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I did the treatments for more than three months, hormone and mirena etc. and just got worse. I didn’t have a blood test as hormones can’t be accurately tested with blood tests. I had a saliva analysis at particular days of my cycle, negative for both menopause and peri. What I have for ten days before my period is really more than ‘spotting’, its bright red blood, occasionally with clots, probably I should have described it as light bleeding. A private gyno suggested a hysterectomy. The pelvic floor physio helps but you can’t go when you’re bleeding which is so often it makes it hard. I do exercises at home they prescribed. I had a lap negative for endometriosis and an MRI negative for any indications of Adenomyosis or deep endo. I feel it’s muscular and stress related for the pain but the bleeding is a mystery. I guess that can be stress related too. Thanks for the advice.

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I didn’t bleed like that but my sister did in her 40s. Made her crazy and eventually had hysterectomy. I had bad endometriosis...had multiple surgeries for it, starting at 24. Had hysterectomy at 41 and it was one of the best days of my life. My sisters both had then by the same age and agree. If you can keep your ovaries, do. I couldn’t but still no regrets.

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Thanks for the reply. Did you sister (with the same bleeding pattern) have endo? Or did she get any other diagnosis?

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My sister did not have endo. She was in her very late thirties and basically having two periods a month. My mother was that way too heading into menopause. My mom didn’t have endo either.

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Hi Mandy at the time I was a 20 something and just remember the surgeon sitting down after my procedure which was investigative and he said those words "erosion of the lining of the womb" it was tested I suspect for cancer and was negative, it was burnt away cauterised may be the term, it was like a sliding of cells and blood that wouldn't heal by itself the pain was horrendous like bad period cramp all the time. We all feel pain differently, thst area for me in a sore point, literally. It was done via vaginal inspection and I'm sure they used a camera and it was a day procedure under anaesthetic.

Adenomyosis was diagnosed for me Jan 2017 by MRI scan, DR Hunter Gynaecology specialist in Belfast translated the scan himself and read the results to me. Apparently it is very difficult to diagnose and only gets truly diagnosed by hysterectomy and inspection. I am due for hysterectomy. Apparently my womb is enlarged, boggy to look at, suspected adhesions of scar tissue etc, extra cell growth.

My swelling and pain have me with 3 bulging discs in my lumbar spine, I'm often urinary incontinent, excessive pain to pass stool and to sit on the toilet in that position especially at the time of the month. I also feel like I carry an internal bum bag. It is heavy and I am frequently cramped and shooting pain in the "ovaries" I say, happens lots during the month, ovulation and before menstruation are particularly painful for me.

May I add that you need to assert yourself, if once you were diagnosed go with that diagnosis, I believe the extra blood flow to the uterous and bloating etc probably shows it up at that time, though at others times in your cycle it could look not as present. Get another scan If you are not happy.

I had a laparoscopy for endometriosis in 2012, only within the operation was taking place did they detect a hiding cyst on my right, it was a chocolate cyst, nasty old blood etc the Spanish Consultant said it was hiding well among my organs etc so it was removed from me.

I believe I am one of the ones that suffer with anything foreign in me, the troubles I've had since I was around 21 are just horrendous.

My body rejected the Marena Coil I was in AGONY with it inside me.

Good luck, keep us updated.

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