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Pelvic Pain Support Network
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What's wrong with me?

Hello I have a question.

For the past four months I have had more or less constant pelvic pain. I have felt sick for nearly two months. I bled last monthfor 25 days. The pain seems to go towards the end of my period and then towards ovulation it starts slowly building up getting worse and worse then eased off again at the end of my period. My periods usually last from 7 to 9 days . And the pain comes worse at the third and fourth day. It's awful. I also had a high fever on and off. The pain is in my back and pelvic area and sometimes runs down to my feet and is relaaly bad too in my thighs. It is worse when I lie down. Doctor has sent me for ultrasound, blood test, back scan, MRI and it has all come back with nothing. He was looking for endo, back infection, cysts.. bit nothing. I am now going to a osteopath. I have no idea what's wrong with me and am confused. I just turned 24 and I don't understand what it could be. I'm a virgin and so I couldn't do the gel for the mri so could they have missed something. Can anyone help me at all? I really appreciate any help. My doctor has been really good. I know I'm fortunate there, but he's tried the PILL, strong anti inflamatrys and even a type of arthritis meds and nothing eases it. What can help?

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Is it possible that you might have a fibroid that is growing in a section of your uterus? They are usually benign but they can be quite large and cause pain. Do you require a CT-scan of your pelvis ....the front not the back.

Are you taking any medications yet?

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Hello thank you so much!

Well I have had an Mri and an ultrasound, would it not show up on that?

I have finally just finished a five day course of strong anti inflammatory tablets usually used on arthritis patients. But they didn't even slightly work. My doctor wants me to restart the pill, I tried it a few weeks back but, then when I started feeling so sick, I stooped it, I had taken it for two three weeks but no pain relief. So now, I try another, In case it is a hormonal imbalance?

Thank you so much again for replying to me!

X

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I was just thinking that perhaps you need an X-ray also?

If the pain is hormonal, has the doctor given you an anti-prostaglandin? Ponstan might help.

How would you describe the pain in your thigh and leg? Tingling? Feeling electrocuted? Aches? Sensitive to touch?

I wonder if something is bothering your sciatic nerve? or....other nerves near it? Amitriptyline may help any nerve pain.

Are you really athletic? Does your work require heavy lifting and regular stooping over your groin to lift things? Have you had a fall recently?

Finally, has the doctor ruled out endometriosis?

Do not give up in finding answers. Chronic pain can cause anxiety and eventually depression if not treated.

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Well, I had a high fever so the doctor thought initially I had a back infection. So it was an X Ray I think that I had.

The pain in my legs is very achy sometimes it can feel like just before you have the flu.

I have had issues with my sciatic nerve, sometimes when I stand up, I litteraly cant walk for a few minutes because it can very intense, but hat is very rare, but I do get pain in my sciatic nerve which is less intense.

Not athletic at all, embarrassingly so. I have had no falls or anything like that.

Doctor hasn't given me anything to affect hormones except the pill.

Don't think that he feels he has completely ruled out endometriosis. He really thought it was that, by nothing on MRI.

Thank you so much for your support. I can't tell you how much it means to me! I am feeling more and more frustrated and every time I don't get an answer it feels worse. I know it isn't in my head but why haven't they found anything?

Xxx

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You state you’re legs are achy. Do you mean the muscles feel sore OR rather, are your joints ( hips, knees, ankles ) sore? The reason I ask is that there are many auto immune derived medical issues that could be a cause. Have you been tested for rheumatoid arthritis, Sjögren’s syndrome, or multiple sclerosis? Have you had the RA lab test, has your C-reactive protein been measured? ( marker for inflammation )

Perhaps you may need to see a rheumatologist or immunologist?

A supplement of magnesium everyday might help the muscle pain if it is myalgia.

Keep calm and carry in advocating for yourself. I wish you strength.

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The pain, is very similar to achy pain, like in period pain. Hard to explain.. Does it help?

My doctor says after the osteopath, he might send me to the rhumatologist. Haven't been tested for any of those things.

I do have very low iron levels though.

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Could you try a natural supplement of iron ? Do you have a Naturopath near where you reside? Their products are usually well made.

Epsom salt baths ma6 help th aches along with magnesium.

Are you able to sleep?

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Just a note on the pill or even the pain medication which whilst being used for arthritis type inflammation it is used for different conditions. It won’t work for in the short space of time you have mentioned Isabella. To see if the pill is working you need to take for a minimum of 3-4 months as it won’t work on hormone levels in such a short space of time. Secondly there are several types of pill available so it is a case of trying several types to see if they work for you. It maybe that one agrees with you more than the other. You will with any medication experience side effects before your body gets used to it and the side effects reduce or disappear- this is the case with nausea. It maybe you find a pill that works well for you in which case the GP can give you an anti sickness medication to take either short or long term.

One of the confusing things with periods is that we automatically assume that pain during a period is gynaecological in nature. This isn’t the case as 50% of laps are negative for endometriosis or any gynaecological cause. Other conditions that can occur exclusively during a period or become worse during a period are IBS,interstitial cystitis etc. In these cases it makes sense to use a medication that works on the period itself which means that often no other treatment is needed other than lifestyle measures. Some women will have both gynaecological causes and non gynaecological problems causing their pain. In some of these cases the pain often is through out the month and more challenging to treat. I myself have both endometriosis, adenomyosis and interstitial cystitis all of which cause severe pain. It maybe that you have had a simple cyst which is extremely common and most women have had them at some stage in their lives and no treatment is required as they are self limiting and go on their own. This may explain your pain as some will get symptoms and then pain before it disappearing over several days whilst others may have pain over several months. This may explain why nothing was seen on your ultrasound scan. I’ve had several and know how painful they can be. These types of cysts are to be confused with other types that occur with polycystic ovaries or endometriomas that occur with endometriosis.

With anti inflammatory medication you need to start them 3-4 days before your period as if you start during they don’t work or don’t work as well. I would retry the pain medication whilst keeping a pain and symptom diary daily for the next 3-4 months. I would also restart the pill and ask for an anti sickness medication at the same time. If you manage to get a referral after that time a gynaecologist would have already expected you to have tried several types of medications to help your period including the pill (several types) otherwise they may suggest you have these before anything else is done. I hope this helps.

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Thank you so much for taking the time to reply to me! I was initially told to take the pill for six months but because of my nausea, I just had no choice to stop, it was so bad. I do a lot of driving, up to eight hours a day, certain days of the weeks, but I could barely reach the end of my road without feeling so terrible. Doctor told me to try another. I will start it at my next period. After all the Tests I had, MRI and ultrasound would that not rule out cysts? What do you think?

I will bear that in mind about the anti inflammatory meds. I know that my doctor wants me to take it for five days (completed) then stop fir five days then take it another five days and see if it made a difference. But it hasn't done.

I have kept a pain diary and it has proved helpful, in finding a pattern.

I'm so sorry to hear of your pain, but it's so lovely of you to use your knowledge and experience to help others. I really appreciate everything you have said.

Yes, I will be eventually referred to a gynecologist, but my doctor said that he wants me to exhaust all other options first. He said if not he hopes they will do a laporscopy. I hope though, it doesn't come to that and that maybe someone, would just de able to say, yes it's this, I had the same! Maybe that's a little silly to think.

Xx

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The type of cyst that is a simple cyst might have burst by the time you had your scan therefore nothing would be there to see. An endometrioma cyst won’t burst as they only occur with endometriosis and are much tougher. These will show up on scans although very rarely they don’t.

It’s very unusual you being told to stop the pill you were taking due to nausea as it could have been stopped by taking an anti sickness medication alongside. If you find the pill helps you you won’t be referred to a gynaecologist as the medication will be controlling what is causing your pain. If not gynaecologists won’t always do a lap as I have mentioned already a high number come back negative. If medication is helping your symptoms laps are very very rarely carried out - obviously that would be revisited if the medication stopped working and you were taking the medication still.

In summary-

At the moment I think it’s too early to be thinking of referrals as you need to have given the medication time to work ( 6 months as a minimum) and carry on even if it causes some side effects as anti sickness medication can be taken.

Also look at other ways to help - Women’s health physiotherapy see this a lot and it can be down to pelvic floor dysfunction. This is can be used by all women not just pregnant women. I’ve used them myself as I developed pelvic floor dysfunction because of the endometriosis, adenomyosis and IC. It can often lead women and doctors to believe the cause is endometriosis but when the lap comes back negative along with other causes and the woman has been to see other specialists often for years with no diagnosis it comes as a surprise. I have seen a women’s physio privately who was fantastic and I’m waiting to be referred on the NHS again as I now work only part time.

If and it’s a big if you have tried every medication for 6 months and it hasn’t helped then a referral to a gynaecologist would be required. At the moment this would most likely be a general gynaecologist as you have not be diagnosed with endometriosis therefore one isn’t required. Endometriosis specialists were only meant to be used by those with confirmed or suspected moderate-severe endometriosis/adenomyosis or those who have confirmed mild/minimal endometriosis that hadn’t responded to normal treatment under a general gynaecologist. The Royal College of Obstetricians and Gynaecologists and the BSGE are looking to tighten this up in the future to those without a confirmed endometriosis/adenomyosis diagnoses and those with mild/minimal disease being looked after by general gynaecologists. Again those with a diagnosis of severe endometriosis or adenomyosis could automatically be given the right to see an endometriosis specialist. At the moment many endometriosis specialists do see those that haven’t got confirmed disease but this is decided on a case by case basis/hospital policy. This would allow patients with severe disease of either kind to be seen quicker by a specialist. Endometriosis and adenomyosis are considered to be the same condition but endometriosis is outside the uterus whilst adenomyosis is inside the uterine lining.

I think at this stage it’s best to keep an open mind about what is possibly causing your pain as it could be a number of things and might disappear overnight- it’s not unheard of. I would focus on the medication your GP has prescribed and don’t expect it to work immediately, look at lifestyle changes-

1) stop smoking if you do,

2) physiotherapy

3) yoga

4) FODMAP to see if your pain is coming or partly coming from your bowels. It’s not unheard of as pain from IBS only to occur with periods even if the bleeding has increased as that could be caused be a slight hormone imbalance which can be helped by the pill or implant. I use FODMAPs myself and my endometriosis specialist recommends this to all her patients

5) mindfulness- again recommend by my endometriosis specialist. She uses it herself and I’ve been using since 2013

6) there are others but I think you have the gist. I’ve used all of these myself except number 1 as I’ve never smoked as I’m an asthmatic

I hope this has helped and feel free to ask any questions

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See if there is a way that maybe the could look inside your vagina with a scope. I never heard of someone having any problems like this and being a virgin. I congratulate on than.

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Plenty of people have these problems and are virgins! My endometriosis and adenomyosis battle which caused 3+ week periods which pain so bad I was vomiting and passing out throughout those 3+ weeks periods until I was officially diagnosed at the age of 34 began at the age of 13. I was a virgin at the age of 13. There is no suggestion that Isabella is necessarily suffering from either of these two conditions and the bleeding may settle down on its own especially if it’s been going on a short time which 4 months is considered.

Secondly they can use a speculum which is used during cervical screening. This the GP can do. If a hysteroscopy is needed to look inside the uterus this can be carried out by a gynaecologist either as an outpatient or whilst in a theatre. Whether these are needed will be based upon whether they are concerned about symptoms and anything potentially sinister

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I have likely had endometriosis all of my life and only last year at age 60 did a laparoscopic surgery reveal some of it!

I agree, it can start in your teens. I had excruciating pain with menstruation and often fainted.

Also to, I could not conceive. Back in 1988 when the infertility issue was wreaking havoc with my marriage, I had a hyster-salphigiogram. The gynaecologist who performed this procedure concluded that I had ‘ retrograde bleeding’ ( blood flowing backwards into my Fallopian tubes and pelvic cavity. ) Retrospectively, I am not sure why he did not suggest it was endometriosis?

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I have never heard of a scope before, thank you very much for the suggestion, I will have to look into that. It has been a bit awkward so far especially at the mri scan, I hate to be such a problem, because it must be annoying for doctors...

Do ou have any idea, what could be wrong?

Thank you so much for your help, I really appreciate that!

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I have never heard of a scope before, thank you very much for the suggestion, I will have to look into that. It has been a bit awkward so far especially at the mri scan, I hate to be such a problem, because it must be annoying for doctors...

Do ou have any idea, what could be wrong?

Thank you so much for your help, I really appreciate that!

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Isabella, how are you doing? Any progress with the pills?

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Hi, thank you!

I'm not doing too brilliant . I finished the course of the pills but they didn't work at all. I'm still on the contraceptive but feel no different but I shall carry on taking it, because maybe someday it'll work.

The osteopath appointments have been very interesting, apparently I have lots of blockages and a deformed spine and loads of other issues but again none of that has made a difference. She said we should try another appointment in ten days which I'm happy to do. In the meantime, I will go back to my gp on Tuesday and hopefully he will try something different. Maybe the gynacelogist? Hope he doesn't give up! I will let you know !

Just sat now with my heat patches in a fair bit of pain. But I m getting used to it more now, i understand the cycle of pain a bit better now ! So that's good! And I have still managed to do what I need to do most days. But I still long to find out what's wrong!

Thank you so much for messaging me again! I hope that you are ok too!

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Be sure to explore PID as a possibility

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Hi, thank you so much, is it possible to have PID without it being caused by a sexually transmitted disease?

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Yes , very likely. Happened to mr , BV and other bacteria can cause it.

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