Does this sound like endometriosis?

[LynzTru]

Hello everyone, I am looking for some advice please. Back when my periods started age 14 they were always very heavy and painful, I particularly recall getting a lot of pain in my thighs which my Mum always referred to as water retention. I would get so bloated I looked pregnant. I went on contraception early which did help matters. I did still suffer painful cramps and heavy periods occasionally. When I was 17 I had pain in my side and ovarian cysts were found and treated with medication.

I am now 29, I was on the mini pill (Cerelle or Cerazette) for two years up until April. I came off as me and my partner are trying to conceive. In May I developed my first UTI with the only symptoms being awful lower stomach pain and pressure in my stomach/pelvis. I had no burning and was passing a normal amount of urine. It took me a long time to go to the Doctor as I presumed the pain was the return of my menstrual cycle ( I stopped the pill April 29th and got the UTI May 15th) I was treated with antibiotics which helped for the most part but I still had a niggle pain in my left side. My first cycle arrived on May 24th lasing 4 days.

I began having regular 30/29 day cycles after this which lasted 3-4 days each, the left sided pain continued along with some weird bouts of nausea on a morning and at night. I did get bad cramps and had to use a hot water bottle regularly.

At the start of this month (around 5th August) the stomach pain/pressure stated again, I was diagnosed with yet another UTI, same symptoms as last time. However the pain did not subside after the antibiotics, the pressure problem only got worse. I have been to A&E three times in agony. All bloods/urine tests are negative. I had an internal ultrasound which was also negative. The Gynae suggested Endometriosis to me but said there was no link to UTI's. The day after the pain was at its worst my period arrived. This has been my heaviest and most painful so far. I am suffering from bad constipation and the pressure in my bladder is almost unbearable. I feel weakened and quite spaced out. I also feel anxious and cant explain the sensation. At night the pain is keeping me awake for hours, I am up drinking peppermint tea and taking codeine which the hospital provided.

The Gynae said Endo doesn't show on the ultrasound so this could be my problem. Has anyone had a similar experience? Could my contraception have been masking/withholding the problem all this time. The Gynae told me to get pregnant asap, however this is not proving easy, especially since I feel so yucky.

Has anyone got any advice to share? I have ordered Cranberry and D Mannose capsules in the hope that they help. I have upped my water and fruit and veg intake and I am cutting out sugar where possible.

Sorry for rambling, any advice would be greatly appreciated.

Lyndsey

[gem1092]

I really feel for you. I have been through this exact same thing and I know how stressful and worrying it can be.

Your symptoms do sound like endometriosis. Clearly I'm not a doctor so I may be wrong but I too had the symptoms you have an I have endometriosis!

The pressure especially rings alarm bells to me, this was one ofmy most prominent symptoms that I experience daily.

Thigh pain is also not a normal symptom of periods.

Constipation and diarrhea intermittently is also a sign of endo.

My gynae told me that because endo tissue is 'flat' it wouldn't show up on an ultrasound, the only way to officially diagnose endometriosis is a laparoscopy.

If your symptoms are getting worse and you are struggling to conceive (as am I do again I feel your pain) I would ask to see a gynae again and push for a lap.

I was on the pill from the age of 13 - 22 because of bad periods and I firmly believe that it masked my symptoms for all that time!

On the endometriosis uk website there is a consultant questionnaire and symptom diary you can print out and fill in. I did this along with keeping a daily symptom diary of my own and literally wrote every pain or symptom I had including bowel movements etc right up until the day of my gynae appt. My consultant was amazing and literally read every page and said it was much better to have it all written down so nothing gets forgotten! So that might be helpful in your case to!

my fingers are crossed for you xx

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Endometriosis will only show during laproscopy and has a possibility of showing during MRI. It might show on ultrasound if you have cysts or are having a period and there's fluid in the abdominal cavity.

Sometimes endo doesn't act up for a few years, in my case: I got my period when I was 8/9, had a crazy amount of IBS symptoms then the pain flared up at 13, went away then I got heavy periods at 16, and now I'm 17 and the pain keeps getting worse sine I've been on my first of 4 contraceptives.

Sometimes the pill will mask symptoms especially the mini pill, endometriosis is dependant on o-estrogen and the tissue of the disease created its own estrogen. However on progesterone pills (from my understanding), the progesterone works against the o-estrogen production so it inhibits the growth and in some cases eventually 'kills' off the endo.

Cranberry pills helped with my UTI's, I kept getting them once a month as while as yeast infections. I know TMI but some people get UTI's from the motions of sex, so alway pee after having sex.

Heating pads are awesome, add essential oils like peppermint, lavender, chamomile, and eucalyptus. Try to do some yoga, it might help for pain.

[LynzTru]

Thankyou ladies for your replies.

I am now almost certain that endo is my problem. Last night and today have been terrible (last day of period) so much so that my fiancé insisted on taking me to hospital. Felt the urge to urinate constantly, thigh pain, shooting stomach pains(belly button area) combined with a persistent deep gnawing feeling. Began to really fear it could be something sinister. I had an ultrasound of my abdomen and pelvis - nothing at all out of the ordinary. Every test was normal. I asked again about Endo and was told by a DR that you only suffer whilst on your period not before or after. This contradicts what I have learned thus far. He loaded me up with painkillers and sent me away with the advice to further pursue a Gynae appointment.

I cannot believe the level of pain that Endo can reach, it really is tortorous. Does anyone else suffer loud stomach sounds and this may be TMI but feel like a wetness 'down there' which isn't really there?

Although I don't have a definitive diagnosis I am confident now that endo is the problem.

[Poorna66]

It is absolutely nonsense that endo can affect you only during your periods, I seriously don't know why doctors continue to be so ignorant about it. I have constant pain almost 3 weeks a month, especially on my left side. It peaks during my periods and before and during ovulation after which it subsides a bit. I only have around 1 good week a month. So it is absolutely not surprising if you have pain outside your periods if you indeed have endo, unfortunately the only way to get a definitive diagnosis is through a laporoscopy.

I would suggest trying the endo and fertility diet. It seems to help a lot of women. Although it did not help me with pain, I do feel a little less tired. It mainly involves eliminating gluten, sugar, caffeine, alcohol, red meat, milk and all diary products from your diet. Although it sounds very restrictive, its not, especially if it works. Also if you feel better on it, you can slowly start adding suspect foods one by one to figure out the ones causing most problems and eliminate only those. There are a couple of free ebooks on amazon kindle unlimited that tell you all you need to know about the diet, if you have a kindle check them out.

There are also other things you can try...I have recently taken up yoga and meditation on the advice of others in this forum and I can honestly say that it is helping. I am just doing a free yoga session I found on youtube, just search for "yoga for endometriosis" and pick out anything by yogayin, her videos are really good. For meditation, headspace is a good app.

I have also heard a lot about the self-fertility massage, although I haven't tried it myself. I have the dvd, and if you are in India, I can send you a copy (I feel pretty sure you are not in India though, lol).

Of course, all these are worth trying only if the pain is not crippling and/or you are already getting treated. I am not sure how well these would work on their own, you are probably the best judge of what approach is best for you.

[LynzTru in reply to Poorna66]

Thanks very much for all of the information you have given me. It really is appreciated and I will definitely be looking into the dietary changes along with taking up yoga. I have noticed that my pain ramps up after certain meals, so far all I have cut is sugar and caffeine but clearly I need to restrict a lot further.

I am sorry that you have pain for so much of the month, it really is horrible. People keep asking me what it feels like and I can't really explain it. I have been so tired aswell - more so than ever before. It's really draining.

I am in the UK so unfortunately cannot take you up on your kind offer to send me the self fertility massage dvd but I will certainly look into this. I really hope I can conceive and manage this soon. I am scared the more time goes by the worse the potential damage to my fertility could be. I am trying to relax but it sure is hard.

I think I am going to push for a referral as I would like the diagnosis confirmed and to at least know what stage I am dealing with. I may try to get pregnant for afew more months first though just incase I am lucky.

Xx

[Poorna66 in reply to LynzTru]

You are welcome and I'll keep my fingers crossed for you. Don't worry too much about fertility. First of all, you are relatively quite young so your chances of being able to conceive naturally are high. I am having lot of difficulties conceiving but then again, my endo is very severe and I am 36. Secondly stress is only going to make your problems worse. As far as I know, scheduling a laporoscopy is anyway going to take some time in UK unless you are going private so you might as well make use of the time to try and get a bit healthier and conceive naturally. Good luck xx